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.

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.

Prenatal Workshops and Support Groups for Prospective Parents Whose Children Will Need Neonatal Care at Birth: A Feasibility and Pilot Study.

Introduction: Support groups in neonatal intensive care units (NICUs) are beneficial to parents. The usefulness of prenatal support groups for prospective parents who will have a newborn requiring admission to the NICU has never been investigated. Methods: We assessed the needs of NICU parents regarding topics they would have wished to discuss prenatally and developed the content of a prenatal support workshop. A standardized survey prospectively evaluated the perspectives of pregnant women admitted to a high-risk pregnancy unit who participated in the resulting workshops. Results: During needs assessment, 295 parents invoked themes they would have wished to discuss antenatally: parental guilt, future parental role, normalizing their experience/emotions, coping with many losses, adapting to their new reality, control and trust, information about the NICU, technology around the baby, common neonatal interventions, the NICU clinical team, and the role of parents in the team. These findings were used to develop the workshop, including a moderator checklist and a visual presentation. Practical aspects of the meetings were tested/finalized during a pre-pilot phase. Among 21 pregnant women who answered the survey (average gestational age 29.3 weeks), all agreed that the workshop was useful, that it made them feel less lonely (95%), that exchanges with other women were beneficial (95%) and gave them a certain amount of control over their situation (89%). All answers to open-ended questions were positive. Conclusion: Prenatal educational/support workshops provide a unique and useful means to support future NICU parents. Future investigations will explore whether these prenatal interventions improve clinical outcomes.

The ethics of family integrated care in the NICU: Improving care for families without causing harm.

The philosophy of care in Neonatal Intensive care Units (NICU) has changed with increasing integration of families. We examined parents' and clinicians' perspective about Family Integrated Care (FiCare) in our quaternary NICU. We found that parents and clinicians reported many benefits for families. They were all enthusiastic about FiCare for non-medical items such as changing diapers and skin-to-skin care; for more medical items, such as presenting at rounds, being present during resuscitation or procedures, most physicians wished for more parental involvement, more than other professionals, even parents. All parents described how FiCare benefited them, had empowered them, helped them feel like parents and become a family; but several parents, who could not participate as much or did not want to assume clinical roles, reported feeling guilty. Having a flexible, yet transparent FiCare philosophy is key, as opposed to having homogeneous goals. For example, an aim to have all parents present at rounds in a quality improvement initiative can cause harm to some families. We suggest how to ethically improve FiCare in the best interest of families while minimizing harms. It is important for FiCare not to be "Family Imposed Care." Optimizing FiCare can only be done when parents' priorities guide our actions, while also keeping in mind clinicians' perspectives and respecting the reality of each NICU.

My child's legacy: a mixed methods study of bereaved parents and providers' opinions about collaboration with NICU teams in quality improvement initiatives.

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. CONCLUSIONS: 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.

Improving neonatal care with the help of veteran resource parents: An overview of current practices.

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.