My child's legacy: A mixed methods study of bereaved parents and providers' opinions about collaboration with NICU teams in quality improvement initiatives
bereavement; legacy-making; mixed-methods study; neonatal intensive care unit; NICU; parental perspectives; provider perspectives
Objective Although stakeholders' participation in healthcare is increasingly recommended, bereaved parents are often excluded for perceived potential risks to them. The objective of this study is to describe the ongoing involvement and the perspectives of bereaved parents engaged in different types of activities in Neonatal Intensive Care Units and providers who work with them. Design/methods Mixed methods convergent analysis. Setting Canadian paediatric tertiary care university hospital. Participants All bereaved members of the resource parents group (n=8) and most providers who work with them (n=16) answered a satisfaction/needs questionnaires. Results Since 2011, eight bereaved parents were involved in a large number of activities mostly related to palliative care (research, education or clinical care initiatives). Three engaged in peer-to-peer support activities while the others preferred activities outside of clinical units and/or without direct interactions with other families. All of them reported that their participation had positive impacts, but two parents also reported a reactivation of traumatic experiences during a medical simulation activity. All participants expressed a desire for further collaboration. Motivation to contribute gravitated around two central themes: helping others and helping themselves. Many wanted to give back, help other families, improve the system and meet with providers who had cared for their child. All stated that this kind of involvement empowered them and gave meaning to their experiences. Providers and researchers all reported positive experiences, mainly due to the unique perspectives of bereaved parents who took part in their projects. Conclusion(s) With careful recruitment and supervision, some bereaved parents can become resource parents involved in different types of activities. It is important to understand the positive impacts this type of engagement can have on their healing process and to control the risks related to their participation. Research is needed to develop pertinent tools and measures to evaluate the outcomes and impacts of their participation. Copyright ©
Bourque C J; Dahan S; Mantha G; Reichherzer M; Janvier A
BMJ Open
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjopen-2019-034817" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2019-034817</a>
Techniques to Communicate Better With Parents During End-of-Life Scenarios in Neonatology
communication; neonatology; parental perspectives; parents; resuscitation
BACKGROUND AND OBJECTIVES: Clinicians are urged to optimize communication with families, generally without empirical practical recommendations. The objective of this study was to identify core behaviors associated with good communication during and after an unsuccessful resuscitation, including parental perspectives. METHODS: Clinicians from different backgrounds participated in a standardized, videotaped, simulated neonatal resuscitation in the presence of parent actors. The infant remained pulseless; participants communicated with the parent actors before, during, and after discontinuing resuscitation. Twenty-one evaluators with varying expertise (including 6 bereaved parents) viewed the videos. They were asked to score clinician-parent communication and identify the top communicators. In open-ended questions, they were asked to describe 3 aspects that were well done and 3 that were not. Answers to open-ended questions were coded for easily reproducible behaviors. All the videos were then independently reviewed to evaluate whether these behaviors were present. RESULTS: Thirty-one participants' videos were examined by 21 evaluators (651 evaluations). Parents and actors agreed with clinicians 81% of the time about what constituted optimal communication. Good communicators were more likely to introduce themselves, use the infant's name, acknowledge parental presence, prepare the parents (for the resuscitation, then death), stop resuscitation without asking parents, clearly mention death, provide or enable proximity (clinician-parent, infant-parent, clinician-infant, mother-father), sit down, decrease guilt, permit silence, and have knowledge about procedures after death. Consistently, clinicians who displayed such behaviors had evaluations >9 out of 10 and were all ranked top 10 communicators. CONCLUSIONS: During a neonatal end-of-life scenario, many simple behaviors, identified by parents and providers, can optimize clinician-parent communication.
Lizotte M H; Barrington K J; Sultan S; Pennaforte T; Moussa A; Lachance C; Sureau M; Zao Y; Janvier A
Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2019-1925" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-1925</a>
Paediatricians' expectations and perspectives regarding genetic testing for children with developmental disorders
Array comparative genomic hybridisation; Attitude of Health Personnel; Autism spectrum disorder; Chromosomal microarray; Developmental disorders; Genetic Testing; Global developmental delay; Autism Spectrum Disorder/genetics; Child; Developmental Disabilities/genetics; Humans; Microarray Analysis; Pediatricians/psychology
AIM: To investigate paediatricians' expectations and perspectives of genetic testing for children with developmental disorders. METHODS: Paediatricians working in a developmental clinic were surveyed each time they ordered a chromosomal microarray (CMA) for a child with developmental disorders. Clinical charts were reviewed. Results were analysed using mixed methodology. RESULTS: Ninety-seven % (73/76) of surveys were completed. Paediatricians reported that 36% of parents had difficulties understanding genetic testing and that 40% seemed anxious. The majority expected testing to have positive impacts on children/families. The themes raised were (i) clarifying the diagnosis (56%), (ii) understanding the aetiology of the condition (55%), (iii) enabling prenatal diagnosis/counselling (43%), (iv) improving medical care for the child (15%) and (v) decreasing parental guilt/anxiety (8%). Less than half anticipated negative impacts; 74% expected that the most helpful result for their patient would be an abnormal result explaining the disorder. Among the 73 children for whom CMA was ordered, 81% got tested: 66% of the results were normal, 19% were abnormal and contributed to explain the condition and 12% were abnormal but of unknown significance. CONCLUSION: Paediatricians generally expect many positive and less negative impacts of genetic testing for children with developmental disorders. Parental perspectives are needed.
Tremblay I; Laberge AM; Cousineau D; Carmant L; Rowan A; Janvier A
Acta Paediatrica
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/apa.14203" target="_blank" rel="noreferrer noopener">10.1111/apa.14203</a>
Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study
death; article; child; female; human; major clinical study; male; palliative therapy; social support; decision making; ethics; thematic analysis; trisomy 13; trisomy 18; trust; adverse event; clinician; disability; questionnaire
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.
Janvier A; Farlow B; Barrington KJ; Bourque CJ; Brazg T; Wilfond B
Palliative Medicine
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216319860662" target="_blank" rel="noreferrer noopener">10.1177/0269216319860662</a>
Improving neonatal care with the help of veteran resource parents: An overview of current practices
Infant Newborn; Humans; Parents; Intensive Care Units Neonatal; Neonatology; Family-centered care; Neonatal intensive care unit; Patient-centered research; Peer-to-peer support; Resource parents; Intensive Care Neonatal/standards; Neonatology/standards; Quality of Health Care/standards
Over the past decade, veteran parents who have lived a neonatal intensive care unit (NICU) experience have become increasingly involved as 'resource parents' to provide peer-to-peer support to "new" NICU parents. These parents can provide a unique form of support to new parents. They can also assume other roles in clinical care, research, administration and/or teaching, but those roles are rarely described in the literature. This article reviews many of the activities performed by resource parents in neonatology. These activities were identified/examined and classified according to the location of involvement (hospital or not), the presence/absence of direct interaction with families and providers, and the topic of involvement. We have also identified gaps in knowledge relative to recruitment and training, development and evaluation of programs, structuring of responsibilities, and remuneration of resource parents. Future research is needed to measure the impact of resource parents on neonatal care.
Bourque CJ; Dahan S; Mantha G; Robson K; Reichherzer M; Janvier A
Seminars in Fetal and Neonatal Medicine
2018
<a href="http://doi.org/10.1016/j.siny.2017.10.005" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2017.10.005</a>