Living ethics: a stance and its implications in health ethics.

Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a "living ethics", described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process.

Guilt and Regret Experienced by Parents of Children Born Extremely Preterm.

OBJECTIVES: To explore decisional regret of parents of babies born extremely preterm and analyze neonatal, pediatric, and parental factors associated with regret. STUDY DESIGN: Parents of infants born <29 weeks of gestational age, aged between 18 months and 7 years, attending neonatal follow-up were enrolled. Hospital records were reviewed to examine morbidities and conversations with parents about levels of care. Parents were asked the following question: "Knowing what you know now, is there anything you would have done differently?" Mixed methods were used to analyze responses. RESULTS: In total, 248 parents (98% participation) answered, and 54% reported they did not have regret. Of those who reported regret (n = 113), 3 themes were most frequently invoked: 35% experienced guilt, thinking they were responsible for the preterm birth; 28% experienced regret about self-care decisions; and 20% regretted decisions related to their parental role, generally wishing they knew sooner how to get involved. None reported regret about life-and-death decisions made at birth or in the neonatal intensive care unit. Impairment at follow-up, gestational age, and decisions about levels/reorientation of care were not associated with regret. More mothers reported feeling guilt about the preterm birth (compared with fathers); parents of children with severe lesions on ultrasonography of the head were less likely to report regret. CONCLUSIONS: Approximately one-half of the parents of infants born extremely preterm had regrets regarding their neonatal intensive care unit stay. Causes of regret and guilt should be addressed and minimized.

Pulmonary important outcomes after extremely preterm birth: Parental perspectives.

AIM: To describe pulmonary important outcomes (PIO) reported by parents of children born extremely preterm. METHODS: Over 1-year, all parents of children aged 18 months-7-years born <29 weeks' GA were asked regarding their perspectives. The proportion of parents who described PIO and the themes they invoked were examined. Results were analysed using mixed methods. RESULTS: Among parental responses (n = 285, 98% participation rate), 44% spoke about PIO, invoking 24 themes pertaining to NICU hospitalisation and/or long-term respiratory health. Some themes had an impact primarily on the child (e.g. exercise limitation), while the majority had an impact on the whole family (e.g. hospital readmissions). None mentioned oxygen at 36 weeks nor bronchopulmonary dysplasia (BPD). The proportion of responses invoking PIO were statistically similar between parents of children with and without BPD, born before or after 25 weeks or with birthweight < or ≥750 g. PIO were more likely to be mentioned in males and among those readmitted for respiratory problems. CONCLUSION: Parents describe many PIO, most related to the functional impact of lung disease on their child (and family), rather than the diagnosis of BPD itself. Most of these PIO are not primary outcomes in large neonatal trials nor collected in neonatal databases.

Gratitude, fragility and strength: Perspectives of adults born preterm about prematurity.

AIM: The aim of the study was to explore how young adults thought that being born preterm had affected their lives. METHODS: Adult participants of a research cohort were questioned about their perspectives. Answers were analysed using mixed methods. RESULTS: Forty-five participants evaluated their health at median score of 8/10. When asked about the meaning of being born preterm, 65% had positive self-centred answers, invoking two main themes: being stronger/'a fighter'/more resilient and being a survivor/chosen; 42% also reported negative themes, such as having health problems and a difficult start. All heard about their prematurity from their parents, 55% with positive child-centred or healthcare system-centred themes, 19% with neutral themes; 35% also heard negative parent-centred themes (tragic experience, guilt, mother's health). When asked which words were associated with prematurity, participants mainly chose positive words for themselves and their family, but more negative words for how the media and society depicted prematurity. Answers were not correlated with adverse objective health measures. CONCLUSION: Participants evaluated their health in a balanced fashion. Preterm-born adults often feel that they have experienced positive transformations as a result of their traumatic start. They often have feelings of gratitude and strength, independent of health problems.

Parental perspectives of outcomes following very preterm birth: Seeing the good, not just the bad.

AIM: To describe parental perspective on health and developmental outcomes of their preterm child in relation to level of neurodevelopmental impairment (NDI). METHODS: A parental survey about their children aged 15-36 months corrected age born ˂29 weeks' gestation investigated parental concerns and positive attributes. Parental responses in relation to their child's level of NDI were examined using Kruskal-Wallis and chi-square for trend tests. RESULTS: One hundred ninety-nine parental responses were obtained for 163 children, including 44% with NDI. Vast majority of parents reported their children were developing well with good physical health. All parents, irrespective of NDI, reported their children were happy and had a positive personality. Appreciation of social interactions was higher for parents of children without versus with NDI (96% vs. 87%, p = 0.039). Parents of children with NDI were more likely to express concerns than those without NDI. Overall, development was the most common area of concern (45%), followed by the child's future (40%) and physical health (35%). CONCLUSION: Parents of preterm children report many positive points and concerns, some of which are not examined in neonatal follow-up data. These parental perspectives could be used to inform parents of preterm infants, both antenatally and in the neonatal unit.

Community, Hope, and Resilience: Parental Perspectives on Peer Support in Neonatology.

OBJECTIVES: To describe the perspective of parents who participated in peer-to-peer support meetings with parents of children in a neonatal intensive care unit (NICU) and veteran resource parents with previous NICU experience. STUDY DESIGN: During a longitudinal evaluation in a tertiary care NICU, participating parents were asked to evaluate meetings; with open-ended questions, they were asked about their perspectives. Results were analyzed using mixed methods. RESULTS: Forty-five NICU parents participated over a 10-week study period. They were followed longitudinally after attending at least 1 of the 10 meetings offered; 95% of parents (43 of 45) reported that the meeting was useful to them and gave an overall evaluation of 8.7 out of 10 (average). For each meeting, all the subjects on the checklist of the moderators (veteran resource parents) were discussed with new parents. When describing why and how the meetings were useful to them in their answers to open-ended questions, NICU parents reported 3 major themes: (1) decreasing isolation and being a community (73%), (2) hope and resilience (63%), and (3) getting practical "parent" information (32%). Sharing stories with parents who also had experienced loss, sadness, and grief, NICU parents trusted that it was possible to adapt and thrive. The meetings normalized parents' emotions (92%), decreased negative emotions (eg, anger, sadness, guilt), empowered them in their parental role, and helped them communicate with loved ones and providers. CONCLUSIONS: Peer support meetings are a unique and useful means to support parents. Future investigations will investigate whether and how this type of intervention can improve clinical outcomes.

Articulating viewpoints to better define and respond to the needs of adolescents and young adult survivors of pediatric brain tumors.

PURPOSE: Adolescents and young adult survivors of pediatric brain tumors (AYA-PBTS) often experience difficulties with social skills, pursuit of studies and employment. This study explored pediatric long-term survivors' perspective on their post-treatment needs and ways to improve resources and interventions. METHODS: We used an original method of three sequential focus group interviews by adding the perspectives of survivors (15-22 years), parents and health professionals (total N = 22). Participants were recruited using purposive sampling from the long-term follow-up clinic at a Canadian tertiary hospital. We used computer-assisted analysis to draw themes from each group and compare thematic content across groups. RESULTS: Categorization of participants' responses resulted in three domains: personal life, education and work. Participants mentioned the improvement of communication tools to facilitate access to timely information, the organization of counseling to improve employment integration, and tailoring interventions to optimize the return to daily activities in aftercare. Subsequent inductive analysis revealed three overarching trends among groups: multipurpose social networking, AYA-PBTS-specific information websites and transition tools and procedures. CONCLUSION AND IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: This study identified solutions for AYA-PBTS' specific needs in aftercare. This population needs up-to-date post-treatment information and refined outreach procedures. Future research should define and prioritize these suggested solutions.

A Portrait of Self-Reported Health and Distress in Parents Whose Child Died of Cancer.

Grieving a child following cancer is a substantially difficult task. The objectives of this research were: 1) to describe current quality of life (QoL), psychological distress and symptoms of grief of bereaved parents, and 2) to explore the role of possible contributors of QoL and psychological distress. Forty-six parents (32 mothers) of children who died of cancer were surveyed on their QoL, distress, and complicated grief. Data were analyzed using multiple linear regression. Parents had a high frequency of grieving symptoms (58%). Mothers reported more retrospective grief symptoms than fathers when describing the year after child death. Current lower mental well-being was associated with experiencing higher retrospective grief symptoms, a shorter period since child death, and being a father. Hence, parents experienced disturbances even long after child death. Mothers and fathers may present specificities that should be considered when developing supportive activities for this vulnerable population.

Health perception by young adults born very preterm.

AIM: This study assessed the self-reported health perception and use of health care by adults born very preterm before 30 weeks of gestation. METHODS: The participants were part of a cross-sectional observational study that assessed the global health of young adults aged 18-29 years born very preterm in Quebec, Canada. Health perception was explored from 2011 to 2016 using the second Short-Form 36 Health Survey (SF-36v2), and objective health measures were obtained. Further in-depth open-ended questions were asked in 2018. RESULTS: The 101 preterm subjects had similar perceptions of their health to 105 term-born controls, according to the SF-36v2, despite significantly more adverse health conditions. Their healthcare use was similar. However, the later in-depth questionnaire showed that 23% of 45 preterm subjects and 3% of 34 term-born subjects perceived their health as poorer than the general population. Major factors that could improve their respective health were lifestyle habits (74% vs. 81%) and eliminating specific adverse symptoms (52% vs. 27%). Only 10% of preterm individuals had been asked about their perinatal history by physicians. CONCLUSION: Adults born very preterm said their health was poorer than the general population and identified specific factors that should be addressed during routine health monitoring.

Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study.

BACKGROUND: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare providers have not been well described. AIM: (1) To investigate parental experiences with clinicians and (2) to provide practical recommendations and behaviors clinicians could emulate to avoid conflict. DESIGN: Participants were asked to describe their best and worse experiences, as well as supportive clinicians they met. The results were analyzed using mixed methods. SETTING/PARTICIPANTS: Parents of children with trisomy 13 and 18 who were part of online social support networks. A total of 503 invitations were sent, and 332 parents completed the questionnaire about 272 children. RESULTS: The majority of parents (72%) had met a supportive clinician. When describing clinicians who changed their lives, the overarching theme, present in 88% of answers, was trust. Parents trusted clinicians when they felt he or she cared and valued their child, their family, and made them feel like good parents (69%), had appropriate knowledge (66%), and supported them and gave them realistic hope (42%). Many (42%) parents did not want to make-or be part of-life-and-death decisions. Parents gave specific examples of supportive behaviors that can be adopted by clinicians. Parents also described adverse experiences, generally leading to conflicts and lack of trust. CONCLUSION: Realistic and compassionate support of parents living with children with trisomy 13 and 18 is possible. Adversarial interactions that lead to distrust and conflicts can be avoided. Many supportive behaviors that inspire trust can be emulated.

Peer support groups for families in Neonatology: Why and how to get started?

AIM: To describe the development of peer-to-peer support meetings between parents of children in neonatal intensive care unit (NICU) and veteran resource parents who had a previous NICU experience. METHODS: The study had two steps: a needs assessment and a feasibility pilot study. Parental perspectives were investigated using mixed methods. RESULTS: One hundred and fifty-three parents were participated. NICU parents (89%) wished to meet resource parents to discuss: their parental role, normalising their experience and emotions, adapting to their new reality, control, guilt, trust and coping. Practical aspects of the meetings were tested/finalised. Resource parent moderators reported that the presence of more than one moderator per meeting was essential. A checklist of topics to discuss was developed. Having a diversity of moderators (fathers, diagnoses other than prematurity, for example) was judged important. The name of the meeting had an impact on attendance: there were less participants when the word "support" was used. The best location (central, parents' kitchen) and optimal time/duration of meetings, selection of parent moderators and compensation were also determined. CONCLUSION: Peer support meetings moderated by resource parents provide a unique and useful means to support NICU parents. Future investigations will explore whether these meetings will improve clinical outcomes.

Beyond a Seat at the Table: The Added Value of Family Stakeholders to Improve Care, Research, and Education in Neonatology.

OBJECTIVES: To analyze activities involving veteran resource parents and patients in a family partnership program; their perspectives were also explored. STUDY DESIGN: The multiple roles assumed by family stakeholders in neonatal initiatives were reviewed. Quality control questionnaires were distributed to resource parents and patients and providers who worked with them. Mixed methods were used to analyze results. RESULTS: Thirty resource parents and patients were involved in a total of 653 activities related to clinical care (n = 413), teaching (n = 31), and research (n = 209); 7 initiatives were described to illustrate the positive impact of family stakeholders on clinical care, teaching, and/or research. Resource parents and patients had different degrees and intensity of involvement: all were involved in low-risk initiatives and 9 in more complex activities. In the questionnaire, family stakeholders all described positive impacts associated with their participation and benefits to themselves, such as meaning making. Three resource parents reported traumatic memories that occurred during medical simulations. The majority of providers report that resource parents and patients improved their projects, but some also report this new collaboration is complex. CONCLUSIONS: Although stakeholder participation increasingly is recommended, practical knowledge and the impact of their participation is scarce. Having several resource parents and patients bring their contributions may be more valuable than a few "expert stakeholders." Recruiting and orienting resource parents and patients toward different types of activities should take into account the complexity and risks of the tasks. Family stakeholders are appreciated and have a positive impact on projects in which they are involved.

The Role of Pediatric Psychologists in the Transition of Youth to Adult Health Care: A Descriptive Qualitative Study of Their Practice and Recommendations.

Transition from pediatric to adult health care setting is a challenge for young patients because of the psychosocial issues they may present that could hinder their commitment to treatment and medical care. Psychologists play a key role in supporting these patients. They intervene with the most vulnerable ones for whom the current transitional practice does not necessarily meet their specific needs and help them to develop an appropriate level of autonomy despite medical condition. To date, few studies have described their clinical practice in this field. This study aimed to gather in-depth information about the elements that characterize their different roles in transition care. Following a semi-structured interviews with ten pediatric psychologists, we conducted a thematic content analysis to identify common themes among participants. The results indicate that the psychologists' practice focuses on four main aspects: assessment, intervention, education, and liaison. Their recommendations point towards a better organization of health care services and a reflection on the best practices in psychology. These results highlight the specific roles that pediatric psychologists play in the transition process within the health care environment.

Psychosocial Intervention Programs for Parents of Children with Cancer: A Systematic Review and Critical Comparison of Programs' Models and Development.

Intervention programs have been developed to help parents cope with their child's cancer. Despite some studies reporting a high level of evidence, it is unclear how these programs build on each other. Appraising models of change is critical to advance scientific knowledge and provide evidence-based interventions. This review aims to identify existing programs, explicitly formulate their underlying models, evaluate how they translate into concrete activities, as well as identify and discuss their development process. Eleven programs based on models of change from cognitive-behavioral, systemic and counselling theories were identified. Many models included a sound theoretical framework, targeted outcomes, as well as implementation strategies. In most cases, preliminary development studies were conducted, but details were rarely provided on how development stages informed the redesign of intervention programs. Acceptability and treatment fidelity were not available for one-third of the programs. Future reports should document the development and design redesign stages prior to conducting efficacy trials, as this step would provide crucial details to critically appraise programs.

Provider Perspectives Regarding Resuscitation Decisions for Neonates and Other Vulnerable Patients.

OBJECTIVES: To use structured surveys to assess the perspectives of pediatric residents and neonatal nurses on resuscitation decisions for vulnerable patients, including neonates. STUDY DESIGN: Pediatric providers were surveyed using scenarios for 6 critically ill patients of different ages with outcomes explicitly described. Providers were asked (1) whether resuscitation was in each patient's best interest; (2) whether they would accept families' wishes for comfort care (no resuscitation); and (3) to rank patients in order of priority for resuscitation. In a structured interview, each participant explained how they evaluated patient interests and when applicable, why their answers differed for neonates. Interviews were audiotaped; transcripts were analyzed using thematic analysis and mixed methods. RESULTS: Eighty pediatric residents and neonatal nurses participated (response rate 74%). When making life and death decisions, participants considered (1) patient characteristics (96%), (2) personal experience/biases (85%), (3) family's wishes and desires (81%), (4) disease characteristics (74%), and (5) societal perspectives (36%). These factors were not in favor of sick neonates: of the participants, 85% reported having negative biases toward neonates and 60% did not read, misinterpreted, and/or distrusted neonatal outcome statistics. Additional factors used to justify comfort care for neonates included limited personhood and lack of relationships/attachment (73%); prioritization of family's best interest, and social acceptability of death (36%). When these preconceptions were discussed, 70% of respondents reported they would change their answers in favor of neonates. CONCLUSIONS: Resuscitation decisions for neonates are based on many factors, such as considerations of personhood and family's interests (that are not traditional indicators of benefit), which may explain why decision making is different for the neonatal population.

Indocyanine green fluorescence angiography in pediatric intestinal resections: A first prospective mixed methods clinical trial.

BACKGROUND: The aim of this study was to establish the feasibility and safety of the use of indocyanine green technology during pediatric intestinal resections. While indocyanine green fluorescence angiography (ICG-FA) has been advocated as an imaging technique to assess bowel perfusion in adults, few studies have evaluated this technology in a pediatric context. METHODS: A prospective clinical trial was conducted. Patients 16 years old or younger undergoing a surgery potentially requiring an intestinal resection were eligible. Patients received a standardized intravenous injection of indocyanine green and intestinal perfusion was evaluated. The study endpoints included safety, impact on bowel resection and feasibility and acceptance of ICG-FA in this population. RESULTS: From May 2020 to March 2021, 30 consecutive patients were included in this trial. Final analysis was done on 28 patients with a median age of 15.00 [6.36,85.00] weeks and weight of 5.58 [3.64,11.70] kg at surgery. Adequate fluorescence was achieved in less than one minute for all cases with an average dose of 0.14 mg/kg. No adverse event related to indocyanine green occurred. ICG-FA versus standard assessment of potential resection sites differed in 62% (95% IC 0.41-0.82) of our cases. Qualitative analysis demonstrated that 95% of the surgical team agreed that ICG-FA was safe. CONCLUSIONS: The use of ICG-FA is feasible and safe for pediatric intestinal resections. Introduction of ICG-FA was simple and acceptance rates were high within the surgical team. This fluorescence imaging may be a valuable imaging technology for intestinal resections in pediatric surgery.

Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders.

Children born very preterm are at risk of severe neurodevelopmental impairment, a composite endpoint that includes cerebral palsy, developmental delay, and hearing and visual impairment defined by medical professionals. We aimed to describe preterm birth stakeholders' perspectives on this classification. Ten clinical scenarios describing 18-month-old children with different components of severe neurodevelopmental impairment and one scenario of a typically developing child (control) were distributed to parents and stakeholders using a snowball sampling technique. For each scenario, participants rated health on a scale from 0 to 10 and whether the scenario represented a severe condition. Results were analyzed descriptively and mean differences from the control scenario were compared using a linear mixed-effects model. Stakeholders (number = 827) completed 4553 scenarios. Median health scores for each scenario varied from 6 to 10. The rating for the cerebral palsy and language delay scenario was significantly lower (mean difference -4.3; 95% confidence interval: -4.4, -4.1) than the control. The proportion of respondents rating a scenario as "severe" ranged from 5% for cognitive delay to 55% for cerebral palsy and language delay. Most participants disagreed with the rating used in research to describe severe neurodevelopmental impairment in preterm children. The term should be redefined to align with stakeholder perceptions.

Fragility and resilience: parental and family perspectives on the impacts of extreme prematurity.

OBJECTIVES: Extremely preterm babies have a significant risk of neurodevelopmental impairment (NDI). There has been little investigation regarding the impact of prematurity on families. The objective of this study was to explore parental perspectives regarding the impact of prematurity on themselves/their family. METHODS: Over 1 year, parents of children born <29 weeks' gestational age (GA) who were between 18 months old and 7 years old and came for their follow-up visit were invited to participate. They were asked to categorise the impacts of prematurity on their life and their family as positive, negative or both and to describe those impacts in their own words. Thematic analysis was performed by a multidisciplinary group, including parents. Logistic regression was performed to compare parental responses. RESULTS: Among parents (n=248, 98% participation rate), most (74%) reported that their child's prematurity had both positive and negative impacts on their life or their family's life, while 18% reported only positive impacts and 8% only negative impacts. These proportions were not correlated with GA, brain injury, nor level of NDI. The positive impacts reported included: an improved outlook on life, such as gratitude and perspective (48%), stronger family relationships (31%) and the gift of the child (28%). The negative themes were stress and fear (42%), loss of equilibrium due to medical fragility (35%) and concerns about developmental outcomes including the child's future (18%). CONCLUSION: Parents report both positive and negative impacts after an extremely preterm birth, independent of disability. These balanced perspectives should be included in neonatal research, clinical care and provider education.

Prioritizing Solutions and Improving Resources among Young Pediatric Brain Tumor Survivors: Results of an Online Survey.

Pediatric Brain Tumor Survivors (PBTS) often experience social, academic and employment difficulties during aftercare. Despite their needs, they often do not use the services available to them. Following a previous qualitative study, we formulated solutions to help support PBTS return to daily activities after treatment completion. The present study aims to confirm and prioritize these solutions with a larger sample. We used a mixed-methods survey with 68 participants (43 survivors, 25 parents, PBTS' age: 15-39 years). Firstly, we collected information about health condition, and school/work experience in aftercare. Then, we asked participants to prioritize the previously identified solutions using Likert scales and open-ended questions. We used descriptive and inferential statistics to analyze data, and qualitative information to support participants' responses. Participants prioritized the need for evaluation, counseling, and follow-up by health professionals to better understand their post-treatment needs, obtain help to access adapted services, and receive information about resources at school/work. Responses to open-ended questions highlighted major challenges regarding the implementation of professionals' recommendations at school/work and the need for timely interventions. These results will help refine solutions for PBTS and provide key elements for future implementation. Translating these priorities into action will need further work involving professionals and decision makers.

Parental sense of competence, paternal stress and perceived construction of the relationship with the premature newborn: A mixed method study.

OBJECTIVE: The aim of this study is to investigate the parental sense of competence, the paternal stress and the perceived construction of the relationship with the infant of during the hospitalization in a neonatal intensive care unit. METHODS: Forty-eight French fathers of premature infants participated in this study, which took place in the Toulouse University Hospital in France. Mixed methods are used, a semi-structured interview and two self-reported questionnaires. RESULTS: Main results show that fathers perceive the construction of the first relationship with their infant through the skin-to-skin and eye contact, along with their immediate presence by their child. The physical contact, although it may induce more stress, it motivates the father to be more involved in the caregiving process. Child's fragile appearance generates more stress to fathers. Finally, the stress linked to the construction of their relationship with the infant will affect their parental sense of competence. CONCLUSION: Results are discussed with respect to recent literature and ways to improve professional practice are proposed.