Quality predictors of parental satisfaction after birth of infants with life‐limiting conditions

Wool, Charlotte; Kain, Victoria; Mendes, Joana; Carter, Brian S.

doi:10.1111/apa.13980

Cited by 19 publications

(22 citation statements)

References 25 publications

(33 reference statements)

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“…10 13 14 Yet, their perspectives and opinions are recognised as important and are increasingly sought. [15][16][17][18][19] Since 2011, we have teamed up with more than 30 resource parents-some of which are bereaved parents-as part of many different initiatives. 10 12 20 We wished to expand our programme and recruit more bereaved parents, but wanted to ensure that we would do so in a responsible fashion.…”

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confidence: 99%

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

Bourque

Dahan

Mantha³

et al. 2020

BMJ Open

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ObjectiveAlthough 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/methodsMixed methods convergent analysis.SettingCanadian paediatric tertiary care university hospital.ParticipantsAll bereaved members of the resource parents group (n=8) and most providers who work with them (n=16) answered a satisfaction/needs questionnaires.ResultsSince 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.

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confidence: 99%

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

Bourque

Dahan

Mantha³

et al. 2020

BMJ Open

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“…Something that can also contribute to families' satisfaction with communication in general and even with the way of receiving bad news is perinatal palliative care, as clearly seen in the literature. 17 Considering that 80% of parents already received a diagnosis of their child's malformation in the prenatal period, many could have already started the communication process at that time. Groups like GAI can help a lot in this context.…”

Section: Discussionmentioning

confidence: 99%

Breaking Bad News in a Neonatal Intensive Care: The Parent’s Evaluation

Marçola

Zoboli

Polastrini

et al. 2020

Rev. paul. pediatr.

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ABSTRACT Objective: To describe the reports of parents of newborns (NB) with congenital malformations hospitalized in a Neonatal Intensive Care Unit (NICU) who received bad news, in order to identify the issues related to the perception of bad news given adequately or inadequately. Methods: A cross-sectional study was conducted from January to October 2018, in which parents of newborns with congenital malformations hospitalized in NICUs were interviewed at visiting hours, according to inclusion criteria. The questionnaire had semi-structured questions related to reception of bad news. Analysis of the data was descriptive. Results: 28 mothers and two fathers were interviewed and 16 (53.3%) reported having had at least one bad news in the NICU. Of those, 10 (62.5%) considered appropriate the way in which the news was given. The justifications were: sincerity of the professional, delicacy to give the news, giving hope to the family, use of appropriate words and demonstration of caring about the newborn. Six participants (37.5%) considered inadequate the way of breaking bad news. The reasons were: unpreparedness and lack of knowledge about the child’s case, use of difficult language, haste or anxiety and discouragement of family hope. Most of the news was given by a professional alone, often by a medical resident. Conclusions: The communication of bad news was considered adequate by the parents, although this perception was not unanimous. This study, therefore, indicates that it is necessary to improve the communication of bad news in this NICU. Training professionals can assist in this process.

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“…Many will experience a loss of identity and a sense of isolation (39). Parents often seek the support of their medical providers who have familiarity with what is initially foreign and often overwhelming to them (66). Parents also seek opportunities to feel or regain a sense of control.…”

Section: Role Of Perinatal Palliative Care-supported Advance Care Plamentioning

confidence: 99%

“…They seek respect for the child's life and shared celebration of the pregnancy milestones and mementos such as maternity pictures, heartbeat recordings, detailed ultrasound images, pregnancy journals, or intentional family activities or rituals. By providing guidance, exploring value systems and goals of care, and creating a space for questions and fears, PnPC teams help families feel supported as parents plan for the life and possibly death of their baby (66,69,70).…”

Section: Role Of Perinatal Palliative Care-supported Advance Care Plamentioning

confidence: 99%

Perinatal Palliative Care Birth Planning as Advance Care Planning

2020

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Purpose of Review: A significant number of pregnancies are complicated by a fetus with a life-limiting diagnosis. As diagnoses are made earlier in the pregnancy, families experience anticipatory grief and are faced with navigating goals of care for a baby that has yet to be born. With the support of the care team, families can begin to grieve, plan, and make meaningful memories during the duration of the pregnancy, the birth of their baby, and life of the child. Creating a palliative care birth plan, which expands beyond the traditional concept for delivery planning to include prenatal, perinatal, and neonatal care has become an important method for parents to process the diagnosis, for parents to document their wishes, and for members of the care team to communicate with the goal of supporting and enhancing the experience of the family. This articles reviews recent and relevant literature on the importance of birth planning and the role of perinatal palliative care when a life-limiting fetal diagnosis is made. Recent Findings: The process of birth planning is an important component of perinatal palliative care. Through this process, families can express their fears, values, hopes, and wishes. It also offers an opportunity for providers to communicate these wishes for the remainder of the pregnancy, the delivery, birth, and time afterwards. This has been demonstrated to decrease maternal stress and promote family centered care. Summary: Perinatal birth planning is an important component of perinatal palliative care when a fetus has a life-limiting diagnosis. The process of birth planning can be supportive and therapeutic as well as an important communication tool. With multiple practices and designs of perinatal palliative care programs, there are no standard tools even though important components have been identified. Ultimately, the strategies outlined here can be used as advance care planning tools.

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Quality predictors of parental satisfaction after birth of infants with life‐limiting conditions

Cited by 19 publications

References 25 publications

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

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

Breaking Bad News in a Neonatal Intensive Care: The Parent’s Evaluation

Perinatal Palliative Care Birth Planning as Advance Care Planning

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