RESUMO
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.
Assuntos
Lactente Extremamente Prematuro , Nascimento Prematuro , Lactente , Feminino , Recém-Nascido , Humanos , Criança , Pais , Emoções , CulpaRESUMO
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.
Assuntos
Neonatologia , Criança , Emoções , Humanos , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Pais/psicologiaRESUMO
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.
Assuntos
Pesquisa Comparativa da Efetividade/métodos , Educação Médica/normas , Pesquisa sobre Serviços de Saúde/normas , Unidades de Terapia Intensiva Neonatal/organização & administração , Neonatologia/organização & administração , Avaliação de Resultados da Assistência ao Paciente , Participação dos Interessados , Pesquisa sobre Serviços de Saúde/economia , Humanos , Recém-Nascido , Neonatologia/educação , Quebeque , Estudos RetrospectivosRESUMO
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.