In-Home Respite Care Services Available to Families With Palliative Care Needs in Quebec: Novel Digital Environmental Scan.

BACKGROUND: Caregiving dyads in palliative care are confronted with complex care needs. Respite care services can be highly beneficial in alleviating the caregiving burden, supporting survivorship and dying at home. Yet, respite care services are difficult to locate and access in the province of Quebec, Canada, particularly when navigating ubiquitous sources of online health information of varying quality. OBJECTIVE: This project aimed to (1) compile a list of at-home palliative respite care services in Quebec, Canada; (2) describe key accessibility features for each respite care service; (3) identify accessibility gaps and opportunities; and (4) describe a novel method for conducting environmental scans using internet search engines, internet-based community health databases, and member checking. METHODS: A novel environmental scan methodology using 2 internet-based targeted databases and 1 internet search engine was conducted. Results were screened and data were extracted, descriptively analyzed, and geographically schematized. RESULTS: A total of 401 services were screened, and 52 at-home respite care services specific to palliative populations were identified, compiled, and analyzed. These respite care services were characterized by various types of assistance, providers, fees, and serviced geographical regions. Accessibility was explored through the lens of service amenability, availability, eligibility, and compatibility. The data revealed important barriers to accessing respite care services, such as a lack of readily available information on service characteristics, limited availability, and a time-consuming, technical search process for potential respite care users and clinicians to identify appropriate services. CONCLUSIONS: Both methodological and contextual knowledge have been gained through this environmental scan. Few methodologies for conducting internet-based environmental scans have been clearly articulated, so we applied several learnings from other scans and devised a methodology for conducting an environmental scan using the mixed methods of internet search engines, internet-based community health databases, and member checking. We have carefully reported our methods, so that others conducting community health environmental scans may replicate our process. Furthermore, through this scan, we identified assorted respite care services and pinpointed needs in the provision of these services. The findings highlighted that more easily accessible and centralized information about respite care services is needed in Quebec. The data will enable the creation of a user-friendly tool to share with community support services across Quebec and ultimately help alleviate the added burden caregivers and clinicians face when looking for respite care services in fragmented and complex digital spaces.

Nature-based mindfulness programs using virtual reality to reduce pediatric perioperative anxiety: a narrative review.

Over 75% of pediatric surgery patients experience preoperative anxiety, which can lead to complicated recoveries. Current interventions are less effective for children over 12 years old. New interventions, like mindfulness-based ones (MBIs), are needed to address this issue. MBIs work well for reducing mental health symptoms in youth, but they can be challenging for beginners. Virtual reality (VR) nature settings can help bridge this gap, providing an engaging 3-D practice environment that minimizes distractions and enhances presence. However, no study has investigated the combined effects of mindfulness training in natural VR settings for pediatric surgery patients, creating a significant gap for a novel intervention. This paper aims to fill that gap by presenting a narrative review exploring the potential of a nature-based mindfulness program using VR to reduce pediatric preoperative anxiety. It begins by addressing the risks of anxiety in children undergoing surgery, emphasizing its impact on physical recovery, and supporting the use of VR for anxiety reduction in hospitals. The review then delves into VR's role in nature and mindfulness, discussing theoretical concepts, clinical applications, and effectiveness. It also examines how the combination of mindfulness, nature, and VR can create an effective intervention, supported by relevant literature. Finally, it synthesizes the existing literature's limitations, findings, gaps, and contradictions, concluding with research and clinical implications.

A comparison of the sociodemographic, medical, and psychosocial characteristics of adolescents and young adults diagnosed with cancer recruited in-person and online: A Canadian cross-sectional survey.

Introduction: Adolescents and young adults diagnosed with cancer (AYAs) are under-represented in research. The Internet and social media could increase the reach of recruitment efforts but may impact sample characteristics. This study evaluated the characteristics of AYAs recruited in-person at an urban hospital versus the Internet in terms of their sociodemographic and medical characteristics, and psychosocial wellbeing, and offers recommendation for increasing the inclusivity and representativeness of research samples. Methods: Participant data from a cross-sectional survey of AYAs in Canada were evaluated. In-person hospital recruitment used a registry to identify patients attending ambulatory clinics. Internet recruitment included notices on hospital, team members', and community partners' social media channels, and email newsletters. Independent sample t-tests and Chi-squared tests were used to identify differences in participant sociodemographic, medical, and psychosocial characteristics based on recruitment source. Results: Of 436 participants, 217 (49.8%) were recruited in-person and 219 (50.2%) online. Online participants were more likely: to be white (p < .001), women (p < .001), and Canadian-born (p < .001); to speak English at home (p < .001), live alone (p = .001) and live in rural settings (p = .014); and to be farther from diagnosis (p = .023), diagnosed with breast cancer (p < .001), and cancer free (p < .001) compared to the hospital sample. Online participants also reported higher anxiety, depression, and loneliness (p < .001), and lower social support (p < .001), self-efficacy for coping with cancer (p < .001), and life satisfaction (p = .006). Conclusions: Online recruitment yielded a more geographically diverse but less sociodemographically diverse sample of AYAs who were farther from diagnosis and had poorer psychosocial wellbeing than in-person recruitment at an urban hospital. Future research efforts should consider partnering with under-represented communities and using targeted and stratified online and in-person recruitment strategies to achieve an inclusive and representative sample of AYAs.

Uncovering the gaps: A systematic mixed studies review of quality of life measures in extremity soft tissue sarcoma.

The health-related quality of life of patients with extremity soft tissue sarcoma (STS) is not precisely captured by current patient-reported outcome measures. Although functional impairment is central to their concerns, multiple sources of distress, emotional restoration, coping strategies, and somatic symptoms are crucial in approaching patients with extremity STS.

Exploring Novice Nurses' Experiences During the First Wave of the COVID-19 Pandemic.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic affected how nurses learn and prepare for their future careers. This study explored the experiences of college-prepared, novice nurses pursuing a baccalaureate degree during the first wave of the pandemic. METHOD: This qualitative descriptive study analyzed students' individual reflective assignments describing the effects of the COVID-19 pandemic on novice nurses' personal, professional, and educational lives. RESULTS: Three themes emerged: (1) emotions generated in the clinical workplace due to the lack of control and the unknown of working as novice nurses during a pandemic; (2) cognitive dissonance of the nursing role regarding novice nurses' moral distress and their growing empowerment within the scope of practice; and (3) a disconcerted image of nursing with contrasting views of nursing from the public's perspective and a disconnect between frontline workers and decision makers. CONCLUSION: Novel pedagogical strategies are needed to help novice nurses cope with stress, uncertainty, and role challenges to foster healthy learning in academic and working environments. [J Nurs Educ. 2023;62(8):461-466.].

The Design, Development, and Usability Testing of an eHealth Program for Youths With Osteogenesis Imperfecta: Protocol for a 2-Phase User-Centered Mixed Methods Study.

BACKGROUND: Innovative approaches are needed to address the self-management needs of youths with osteogenesis imperfecta (OI) transitioning into adult-oriented health care systems. Using a sequentially phased research approach, the goal is to design, develop, and test the usability of an innovative eHealth program called "Teens Taking Charge: Managing OI Online," hereafter named "Teens OI." This program seeks to optimize self-management, facilitate a successful transition to adult care, and address a critical gap in the quality of care for youths with OI. OBJECTIVE: The study objectives are to (1) design and develop an English and French version of the Teens OI and (2) test the usability of the Teens OI in terms of efficiency, effectiveness, and satisfaction from the perspectives of youths with OI and their parents. METHODS: A user-centered design is presently in progress to design and develop Teens OI. A "Website Design and Development Council" (ie, Council) has been convened, with 20 youths and parent dyads recruited and global experts surveyed at an international meeting. With unanimous support from the Council, usability testing of the Teens OI will ensue in 4 iterative cycles with 32 youth-parent dyads. All sociodemographic and usability metrics will be descriptively analyzed. All recorded interview and focus group data are analyzed using content analysis techniques involving an iterative process of data reduction, data display, conclusion drawing, and verification. RESULTS: As of December 2022, an 8-person, interdisciplinary Teens OI council, comprising 4 health care professionals, 3 youths and young adults with OI, and 1 parent, has been convened to oversee the design and development of Teens OI. Two cycles of interviews have been conducted with 10 youths with OI with or without their parents (n=6) from December 2021 to September 2022. Data analysis has been in progress since April 2022. Aim 2 is ethically approved and will commence following the completion of content development, expected by late July 2023. Preliminary analysis indicates that the following topics need to be prioritized for the youths: mental health, pain, accessibility, medical care, education, community, and parental care. CONCLUSIONS: The proposed study will design and develop a self-management and transitional care program for youths with OI in partnership with patients, caregivers, and health care professionals. This study leverages youths' openness to adopt eHealth technologies to meet their needs and has the potential to actively engage them to autonomously manage their lifelong conditions, and facilitate a successful transition to adult health care. Finally, the proposed study will also address a critical gap in the quality of care and the growing concern that the OI population transitioning from pediatric to adult care is at risk of various adverse events associated with the transition. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/47524.

Information and Communication Technologies to Support the Provision of Respite Care Services: Scoping Review.

BACKGROUND: Respite care is one of the most frequently requested support services by family caregivers. Yet, too often, respite care services are inaccessible, due in part to families' lack of knowledge regarding available services and a lack of service flexibility. Information and communication technologies (ICTs) may help to improve the flexibility of services available and families' knowledge of such services. However, an understanding of the use of ICTs and research in this area is lacking. OBJECTIVE: The objective of this study was to provide a comprehensive overview of the academic literature on ICTs for supporting the provision of respite care services. METHODS: A scoping review study was conducted. Six library databases were systematically searched for relevant literature. Key data were extracted into a summary chart. Text and quantitative data were coded using descriptive qualitative content analysis techniques, and the results were collated and summarized into a comprehensive narrative. RESULTS: A total of 23 papers describing 15 unique ICT programs exploring the potential of ICTs to support respite care services met the inclusion criteria. ICTs supported the provision of respite care by facilitating information-sharing with families and providers, recruiting and training respite care providers, and coordinating services. Key design considerations for developing respite care ICTs were trustworthiness and participatory design methods. Implementation considerations included designing for complementarity with existing services, assessing the appropriate timing for introducing the ICT-based services, and ensuring adequate promotion strategies to raise awareness about the services. CONCLUSIONS: There is limited but promising research on the potential of ICTs to support the provision of respite care services. Further research should be conducted to advance the results of this review, ultimately aiming to build ICTs that can improve the quality of, and access to, respite care services.

How Children's participation ought to be practiced: A preliminary ethical framework to optimise the participation of children with osteogenesis imperfecta in health care.

BACKGROUND: A three-phase ethnography was conducted at a paediatric orthopaedic hospital exploring the actual and desired participation of children with Osteogenesis Imperfecta in discussions, decisions and actions in the hospital and community. Phase I and Phase II revealed how childhood ethics are understood and practiced in the hospital using artmaking to engage children in discussions about their health-related experiences. Children expressed frustration, anger and disappointment when their desired level of participation in care was not actualized due to forgone opportunities for engagement by clinicians or lack of child-oriented health resources. OBJECTIVES: The objective of this study (Phase III) was to specify how childhood ethics ought to be understood and practiced in the hospital by (1) convening hospital stakeholders in a collaborative setting to disseminate findings, identify ethical concerns and generate action steps; and (2) develop a preliminary ethical framework to optimise the participation of children with OI in health care. DESIGN: Focused ethnography reported using the SRQR checklist. METHODS: A focus group was conducted with 14 interdisciplinary hospital stakeholders. Data were analysed using qualitative, thematic analysis to understand primary ethical concerns and accompanying action steps. The findings were consolidated into a preliminary ethical framework and worksheet for clinicians. RESULTS: Four main factors impeding children's voices and desired participation were identified: legal and contextual factors; variations in clinicians' skills, practice and knowledge; difficulties incorporating alternative engagement methods into practice; and need for interprofessional collaboration. Five action steps were identified: Recognise, Elicit, Interpret, Act and Optimise. RELEVANCE TO CLINICAL PRACTICE: The focus group and creation of clinician resources were important steps towards addressing the ethical concerns of children with OI, such as marginalisation or exclusion in their OI care. This study better prepares us to disseminate our findings on a larger scale and create ethical frameworks and resources to improve how vulnerable children's voices are heard, understood and acted upon in healthcare settings.

"Informal Caregiver" in Nursing: An Evolutionary Concept Analysis.

The informal caregiver experience has surged as a research topic in health care, including in nursing. However, the "informal" language is controversial, lacking conceptual clarity. Without a common understanding of who an "informal caregiver" may be, nurses may fail to consistently identify informal caregivers requiring support. Therefore, a concept analysis of "informal caregiver" was conducted on the basis of a sample of 20% of relevant nursing literature. The analysis of the attributes, antecedents, consequences, and contexts associated with "informal caregiver" offers a foundational guide for the ongoing development of nurses' understanding of the informal caregiver role.

Use of Netnography to Understand GoFundMe® Crowdfunding Profiles Posted for Individuals and Families of Children with Osteogenesis Imperfecta.

Osteogenesis imperfecta (OI) is a rare genetic disorder associated with low bone density and increased bone fragility. OI can lead to a variety of supportive and medical care needs; yet financial impacts for families and individuals living with OI remain understudied and largely invisible. Efforts by families to recover costs through GoFundMe®, the most important crowdfunding web platform worldwide, offer an unprecedented opportunity to gain insight into OI costs. The purpose of this study was to describe GoFundMe® profiles and determine what factors may contribute to funding goal achievement. A netnographic approach was used to investigate a publicly available dataset from GoFundMe®, with 1206 webpages extracted and 401 included for analysis. Most webpages originated from the United States and were created by family members. Nineteen cost categories were identified. Thirty-seven web profiles met their funding goal. Funding increases or goal achievements created for children were associated with increased social-media exposure (i.e., Facebook). This study helped to describe and showcase the financial impacts of OI and effectiveness of a crowdfunding website to alleviate costs. The results highlight the need for further research to better understand OI costs and provide economic supports for individuals with OI.

The moral experiences of children with osteogenesis imperfecta.

BACKGROUND: Serious ethical problems have been anecdotally identified in the care of children with osteogenesis imperfecta (OI), which may negatively impact their moral experiences, defined as their sense of fulfillment towards personal values and beliefs. RESEARCH AIMS: To explore children's actual and desired participation in discussions, decisions, and actions in an OI hospital setting and their community using art-making to facilitate their self-expression. RESEARCH DESIGN: A focused ethnography was conducted using the moral experiences framework with data from key informant interviews; participant observations, semi-structured interviews, and practice-based research (art-making) with 10 children with OI; and local documents. PARTICIPANTS AND RESEARCH CONTEXT: The study was conducted at a pediatric, orthopedic hospital. ETHICAL CONSIDERATIONS: This study was approved by McGill University Institutional Review Board. FINDINGS/RESULTS: Children expressed desires to participate in their care, but sometimes lacked the necessary resources and encouragement from healthcare providers. Art-making facilitated children's voice and participation in health-related discussions. CONCLUSIONS: Healthcare providers are recommended to consider the benefits of art-making and educational resources to reduce discrepancies between children's actual and desired participation in care and promote positive moral experiences.

Peer Support Needs and Preferences for Digital Peer Navigation among Adolescent and Young Adults with Cancer: A Canadian Cross-Sectional Survey.

Adolescents and young adults (AYA) with cancer desire peer support and require support programs that address their unique needs. This study investigated the need for, and barriers to, peer support and preferences for digital peer navigation among AYA. A cross-sectional survey was administered to AYA, diagnosed with cancer between the ages of 15-39, at a cancer center and through social media. Descriptive summary statistics were calculated. Participants (n = 436) were on average 31.2 years (SD = 6.3), 3.3 years since-diagnosis (SD = 3.8), and 65% (n = 218) were women. Over three-quaters (n = 291, 76.6%) desired peer support from cancer peers, but 41.4% (n = 157) had not accessed peer support. Main access barriers were: Inconvenience of in-person support groups (n = 284, 76.1%), finding AYA with whom they could relate (n = 268, 72.4%), and finding AYA-specific support programs (n = 261, 70.4%). Eighty-two percent (n = 310) desired support from a peer navigator through a digital app, and 63% (n = 231) were interested in being a peer navigator. Participants indicated a greater need for emotional (n = 329, 90.1%) and informational support (n = 326, 89.1%) than companionship (n = 284, 78.0%) or practical support (n = 269, 73.6%) from a peer navigator. Foremost peer matching characteristics were cancer-type (n = 329, 88.4%), specific concerns (n = 317, 86.1%), and age-at-diagnosis (n = 316, 86.1%). A digital peer navigation program was desired by over 80% of a large Canadian sample of AYA and could potentially overcome the barriers AYA experience in accessing peer support. The design of a peer navigation program for AYA should consider the matching characteristics and multidimensional support needs of AYA.

Use of virtual reality in managing paediatric procedural pain and anxiety: An integrative literature review.

AIMS: This integrative review aimed to identify, analyse and synthesise studies investigating the clinical efficacy of virtual reality (VR) distraction for children undergoing varying painful and anxiety-inducing medical procedures across different hospital settings and to identify implications for research and clinical practice. BACKGROUND: Virtual reality has been leveraged as a distraction tool in the healthcare setting to help patients manage procedural pain and anxiety. Initial studies in the burn wound care setting using VR as a non-pharmacological analgesia led to the use of VR during other medical procedures. DESIGN: An integrative review of the literature was conducted following the PRISMA guidelines across four electronic databases. Published studies between 2000 and 2020 investigating the clinical efficacy of VR in managing paediatric procedural pain or anxiety were included for review. RESULTS: Reviewed studies collectively included 2,174 patients aged 6 months-18 years used VR during burn wound care, post-burn physiotherapy, dental, needle-related and other procedures. Additionally, ten studies included samples with adults, for which paediatric data could not be isolated (n = 507). Overall, studies supported the efficacy of VR in managing procedural pain and anxiety in the paediatric setting. CONCLUSION: Virtual reality is redefining pain management by immersing children in a virtual world, reducing pain and anxiety at the hospital. A notable gap was the neglected use of VR in children with chronic conditions receiving orthopaedic procedures as part of their standard care. RELEVANCE TO CLINICAL PRACTICE: Ultimately, VR distraction will reduce the fear associated with medical interventions, preventing increased pain sensitivity, exacerbated anxiety and healthcare avoidance in adulthood. Nurses will play an important role in ensuring the smooth integration of VR in clinical practice by championing the technology and transferring evidence-based methods for VR use.

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.

BACKGROUND: Patients 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. OBJECTIVE: The 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. METHODS: This 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. RESULTS: We anticipate that preliminary results will be available by Spring 2022. CONCLUSIONS: An 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): PRR1-10.2196/34652.

Experiences of Children With Osteogenesis Imperfecta in the Co-design of the Interactive Assessment and Communication Tool Sisom OI: Secondary Analysis of Qualitative Design Sessions.

BACKGROUND: Children with osteogenesis imperfecta (OI) experience a diversity of symptoms that expose them to difficult physical, mental, and social challenges. Sisom (DHealth) is an interactive assessment and communication tool designed to help children aged 6-12 years with chronic conditions express their symptoms. Recently, the co-design of the Sisom OI paper prototype was launched by seeking the perspectives of end users, including children with OI and their clinicians. OBJECTIVE: The aim of this study is to describe the experiences that children with OI were prompted to share with researchers during the co-design of the Sisom OI paper prototype. METHODS: A secondary analysis of qualitative data was conducted at a university-affiliated, pediatric, orthopedic hospital. The data sources consisted of interview transcripts, drawings, field notes, and observations derived from interviewing 12 children with OI who participated in the co-design of the Sisom OI paper prototype. The themes and subthemes identified from the data sources were generated using qualitative description. RESULTS: Three themes were identified. The first, Relating to Others, described the balance between feeling different versus feeling similar to other children. The subthemes were Common OI Experience, Feeling Different, and Feeling Just Like Others. The second, Relating to Their Condition, described children's positive and negative interactions with their own condition and health care. The subthemes were Understanding Their Condition, Special Relationship with the Hospital, and Difficult Treatments and Procedures. The third, Reflecting on Capabilities, described children's recognition of their strengths and limitations. The subthemes were Perceiving Limitations, Overcoming Isolation, and Celebrating Strengths. CONCLUSIONS: This co-design process provided children with OI the space to not only contribute to the development of the end product but also eloquently describe their experiences. These findings, based on the descriptions given by the children themselves, offer us a unique understanding of what it means to grow up with OI.

A roadmap to surgery in osteogenesis imperfecta: results of an international collaboration of patient organizations and interdisciplinary care teams.

Background and purpose - Involvement of patient organizations is steadily increasing in guidelines for treatment of various diseases and conditions for better care from the patient's viewpoint and better comparability of outcomes. For this reason, the Osteogenesis Imperfecta Federation Europe and the Care4BrittleBones Foundation convened an interdisciplinary task force of 3 members from patient organizations and 12 healthcare professionals from recognized centers for interdisciplinary care for children and adults with osteogenesis imperfecta (OI) to develop guidelines for a basic roadmap to surgery in OI.Methods - All information from 9 telephone conferences, expert consultations, and face-to-face meetings during the International Conference for Quality of Life for Osteogenesis Imperfecta 2019 was used by the task force to define themes and associated recommendations.Results - Consensus on recommendations was reached within 4 themes: the interdisciplinary approach, the surgical decision-making conversation, surgical technique guidelines for OI, and the feedback loop after surgery.Interpretation - The basic guidelines of this roadmap for the interdisciplinary approach to surgical care in children and adults with OI is expected to improve standardization of clinical practice and comparability of outcomes across treatment centers.

Exploring Nursing Students' Experiences in the Anatomy Laboratory to Optimize Their Learning.

BACKGROUND: In medicine, dissecting human cadavers is vital for learning anatomy, developing professional skills, and fostering a relationship with the body. This opportunity has received little pedagogical attention in nursing. The purpose of this study was to understand the experiences of nursing students in the human anatomy laboratory to inform strategies that may be implemented to optimize learning. METHOD: A qualitative descriptive study was conducted to analyze reflective assignments completed by undergraduate and graduate nursing students following participation in a required session in the human cadaver anatomy laboratory. RESULTS: Overall, 168 assignments were included in the analysis. Three themes were identified: Coping With the Initial Shock, Reflecting on the Salience of Death and Dying, and Acknowledging Impacts on Future Practice. CONCLUSION: The students' reflections support the integration of a human anatomy laboratory session into the nursing curriculum and inform strategies to foster learning and development. [J Nurs Educ. 2021;60(4):221-224.].

An Ethnographic Study of the Moral Experiences of Children with Cancer in New Delhi, India.

There is a paucity of research examining children's experiences with cancer in India. Childhood ethics is an emerging field, focusing on the moral dimension of children's experiences, to promote children's participation in their health care. A focused ethnography, using a moral experience framework, was conducted to better understand children's participation in decisions, discussions, and actions in three oncology settings in New Delhi, India. We interviewed key informants, retrieved key documents, and conducted semi-structured interviews and participant observations with children. All 22 children demonstrated interest in varying aspects of their cancer care. Certain factors facilitated or impeded their participation. Some children became distressed when they lacked information about their treatment or were not given opportunities to enhance their understanding. The results advance our understanding of the moral experiences of children with cancer in India for healthcare professionals, policy makers, families, and interested others.