Ethical challenges for children undergoing surgery: Evaluation of graduate nursing students' learning

Background Multiple barriers can impede the holistic care of children and their meaningful involvement in their healthcare in the context of surgery. These include lack of clinician knowledge of the ethical concerns impacting children and scarce educational resources. Our team created an open-access training module (https://childsxethics.net) to enhance clinicians’ understanding of ethical challenges for children undergoing surgery.  Objective To evaluate the level of Bloom’s Taxonomy cognitive, affective, and psychomotor learning reached by graduate nursing students after completing the module.  Methods A qualitative descriptive study was conducted. Data sources comprised of participants’ course assignments. Data were analysed inductively and deductively using Bloom’s Taxonomy and the Childhood Ethics Framework. Results Nineteen participants wrote online reflections and peer responses. Two subgroups completed group assignments. The module and associated class assignments successfully promoted high levels of cognitive and affective learning of ethical challenges impacting children undergoing surgery. The type of assignment influenced participants’ level of learning and achievement of learning objectives. Cognitive and affective learning processes were enhanced when integrating reflections and fostering dialogue/interaction among peer learners.  Implications Study findings will be used to improve the module. Future iterations will include collaborations with international clinicians to enhance the global relevance of the module contents, which will be evaluated with other clinicians/trainees. Providing educational resources for clinicians on ethical challenges in children’s surgery will help facilitate the recognition of children as active moral agents and improve their surgical experiences by promoting holistic patient care

Costs Incurred by Families of Children Newly Diagnosed with Cancer in Ontario

Problem: Financial strain has been reported by families of children with cancer. However, the specific costs and their impact on these families remain unknown. Objectives: (a) to identify the costs incurred by families of children newly diagnosed with cancer in Ontario, (b) to determine the variables that influence these costs, and (c) to explore the impact of these costs on families. Conceptual Framework: The conceptual framework incorporated the social, economic, disease, and treatment cost predictors with the direct and indirect cost of illness components. Setting: Two university-affiliated tertiary paediatric hospitals in Canada. Sample: English speaking parents of children newly diagnosed with cancer who were receiving treatment. Design: A prospective concurrent mixed method design. Instrumentation: The Ambulatory and Home Care Record © (AHCR) (Guerriere & Coyte, 1998) was used to record costs and an interview guide was developed to explore the impact of these costs on families. Procedure: Parents recorded the resources consumed and costs incurred during one week per month for three consecutive months beginning the 4th week following diagnosis and listed any additional costs incurred since diagnosis or between the face-to-face interviews. Parents also discussed the impact of these costs on their families in an audio taped interview. Data Analysis: Descriptive statistics and multiple regression modelling were used to describe families’ total costs (expressed in 2007 Canadian dollars) and to determine factors that influenced them. Descriptive qualitative content analytic methods were used to analyze the transcribed interview data. Results: In total, 99 parents including 28 fathers and 71 mothers completed three sets of cost diaries. The mean total three month expenditure was $28,475 (SD$12,670; range $2013 to$79,249) per family. There were no statistically significant factors that influenced families’ direct costs; however, 23% of the variance for indirect costs was explained by inpatient tertiary hospitalizations, language spoken at home, and distance to the hospital. Parents described the costs associated with their child’s illness and coping and management strategies used to lessen the financial impact including managing their expenses and seeking ways to increase their cash flow. Significance: Findings will inform health professionals and policy makers about families who are faced with potentially catastrophic costs following their child’s diagnosis with cancer.Ph

Childhood Worldings of Brittle Bone Disease: A Portrait in Five Triptych Research Poems

This paper offers a collection of found poems offering insights into representative worlds of children living with dis/abilities, chronic hospitalizations, and the ethical dilemmas surrounding their perioperative care. The collection represents the sum tota poetic crystallization of a multiyear ethnography focused on the ethical experiences of the childhood osteogenesis imperfecta community as encountered in a specialized North American pediatric OI clinic. The collection deliberately bridges multiple separate (yet deeply connected) worlds of children, clinicians, and family members to reveal their interdependence and yet preserve each individual’s distinct viewpoints

B (2005) Quality of life of children following bone marrow transplantation: critical review of the research literature. Eur J Oncol Nurs 9(3):218–238

Summary Children's quality of life (QOL) following bone marrow transplant (BMT) is an important but poorly understood concept. The aim of this paper is to critically review all research study designs to determine the QOL of childhood BMT recipients and to identify implications for research, practice and theory. The studies' methodological quality was evaluated separately by two investigators according to a set of formal criteria modified from Hoodin and Weber (Psychosomatics 44 (2003) 181). The review yielded one retrospective, one cross-sectional, six descriptive surveys and two prospective longitudinal study designs. The studies included 568 childhood BMT recipients ranging from 0.8 to 33 years. Only one study used a generic and disease-specific, psychometrically sound, QOL measure. Timing of assessments ranged from pre-BMT to 21 years following BMT. Due to the poor methodological quality, rendering conclusions across the studies was challenging. While the available evidence seems to suggest children experience good QOL following BMT, several studies found BMT to have a negative impact on various aspects of QOL. These results appear to be influenced by timing and type of measurements undertaken. Ultimately, there is a need for larger, more methodologically rigorous trials using prospective longitudinal study designs with pre-and post-measures to examine all QOL domains in children

Developing an mHealth Application to Coordinate Nurse-Provided Respite Care Services for Families Coping With Palliative-Stage Cancer: Protocol for a User-Centered Design Study

BackgroundPatients living with palliative-stage cancer frequently require intensive care from their family caregivers. Without adequate community support services, patients are at risk of receiving inadequate care, and family caregivers are at risk for depression and poor health. For such families, in-home respite care can be invaluable, particularly when the services are flexible and staffed by trusted care providers, such as nurses. Other industries are using mobile apps to make services more flexible. However, few apps have been developed to coordinate nurse-provided respite care services, and to our knowledge, none have been designed in conjunction with families affected by cancer. ObjectiveThe aim of this study is to develop a mobile health (mHealth) app prototype for coordinating flexible and trusted in-home respite care services provided by nurses to families coping with palliative-stage cancer in Québec, Canada. MethodsThis user-centered design research comprises the core component of the iRespite Services iRépit research program. For this study, we are recruiting 20 nurses, 15 adults with palliative-stage cancer, and 20 of their family caregivers, from two palliative oncology hospital departments and one palliative home-care community partner. Overseen by an Expert Council, remote data collection will occur over three research phases guided by the iterative Information Systems Research Framework: Phase 1, brainstorming potential app solutions to challenging respite care scenarios, for better supporting the respite needs of both family caregivers and care recipients; Phase 2, evaluating low-fidelity proofs of concept for potential app designs; and Phase 3, usability testing of a high-fidelity interactive proof of concept that will then be programmed into an app prototype. Qualitative and quantitative data will be descriptively analyzed within each phase and triangulated to refine the app features. ResultsWe anticipate that preliminary results will be available by Spring 2022. ConclusionsAn app prototype will be developed that has sufficient complimentary evidence to support future pilot testing in the community. Such an app could improve the delivery of community respite care services provided to families with palliative-stage cancer in Québec, supporting death at home, which is where most patients and their families wish to be. International Registered Report Identifier (IRRID)PRR1-10.2196/3465

The psychosocial experience of individuals living with osteogenesis imperfecta: a mixed-methods systematic review

Osteogenesis imperfecta (OI) is a genetic disorder (prevalence: 1:10,000), leading to bone fragility, frequent fractures, and varying degrees of physical limitations. Despite a substantial amount of research on the genetics, pathophysiology, and treatments related to OI, there remains a paucity of knowledge concerning the lived psychosocial experience of the OI population. This mixed-methods systematic review aimed to review, appraise, and synthesize the literature on the psychosocial experience of children and adults with OI with the goal of identifying implications for research, practice, and policy-making. Using a systematic methodology, quantitative, qualitative, and mixed-methods studies were accessed through database searching, screened, assessed for eligibility, and appraised. Data from the selected studies fulfilling the eligibility and quality criteria were extracted and synthesized using thematic analysis with an inductive approach. A total of four qualitative and 20 quantitative studies, with various study designs and methodologies ranging in quality, were included in the review (n = 800comprising 610 children and 175 adults with OI types I, III, IV, and V, ten parents and five healthcare professionals). Six themes were identified: intellectual feats, isolation and feeling different, fear of fractures, coping with challenges, adapting by learning new skills, and social relationships. These findings highlighted key aspects of the experiences of children and adults with OI and will be essential for improving the quality and direction of research, tailoring clinical interventions addressing the psychosocial needs and quality of life of individuals with OI, and raising awareness among caregivers, healthcare professionals, administrators, and policy-makers associated with the OI population.Newton FoundationTunis ShrinersQuebec Nursing Intervention Research NetworkMcGill Univ, Ingram Sch Nursing, Fac Med, Montreal, PQ H3A 2A7, CanadaShriners Hosp Children Canada, Montreal, PQ, CanadaUniv Fed Sao Paulo, Div Endocrinol, Bone & Mineral Unit, So Paulo, BrazilMcGill Univ, Sch Phys & Occupat Therapy, Fac Med, Montreal, PQ, CanadaCHU Ste Justine, Montreal, PQ, CanadaUniv Montreal, Fac Nursing, Montreal, PQ, CanadaUniv Fed Sao Paulo, Div Endocrinol, Bone & Mineral Unit, So Paulo, BrazilWeb of Scienc