Palliative Care and Grief Counseling in Peri- and Neonatology: Recommendations From the German PaluTiN Group

Garten, Lars; Globisch, Marcel; Hude, Kerstin von der; Jäkel, Karin; Knochel, Kathrin; Krones, Tanja; Nicin, Tatjana; Offermann, Franziska; Schindler, Monika; Schneider, Uwe; Schubert, Beatrix; Strahleck, Thomas

doi:10.3389/fped.2020.00067

Cited by 13 publications

(13 citation statements)

References 109 publications

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“…Therefore, even with all their accumulated knowledge, the health team supported the parental exercise of neonatal care, reassuring and calming the parents until the end of their child's life. (14) The report is an example in line with the literature, which suggests the continuous development of skills to care for the grief of parents who have lost their newborn, creating a reconnection between the parties and alleviating the pain through empathy and family-centered care, (15) as well as highlighting the importance of empathy towards the feelings experienced by the team, and the provision of adequate emotional support. Gustav Klimt's magnificent work Death and Life (Figure 1), (16) alludes to the modern dance of death, inducing a note of hope and reconciliation, for instead of feeling threatened by the figure of death, human beings seem to welcome it.…”

Section: ❚ Case Reportmentioning

confidence: 66%

The impact of approaching grief on the neonatal team: professional experience report

Griffin¹,

Pamponet²,

Bella³

et al. 2022

Einstein (São Paulo)

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This case report describes the holistic performance of the multidisciplinary team in a context of approaching the moment of death of a newborn, in a cross-cultural approach, and its impact on the working group. We report the clinical case of a neonate diagnosed as severe congenital heart disease, who evolved with early surgical intervention and died on the second day of life. Considering the neonatal intensive care unit an area requiring performance of a specialized team that addresses, with a high level of complexity, in a broad way, the patient, and his family, the death of a child breaks the logic of the life cycle. The multiprofessional and family management of the newborn in question illustrates the opportunities that are still being improved in the care of mourning in the neonatal period. Demonstrating that the care process does not end at the time of death, and the period of mourning is still a challenge for the neonatal team. Even so, parents can be welcomed, with care provided in a private and secure manner, with their needs, and preserved individuality. We observe the need for professional qualification and support for mourning and the need for specific institutional policies, since the health organizations must be attentive and take care of those who care, be cared for with a different look at their emotions.

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Section: ❚ Case Reportmentioning

confidence: 66%

The impact of approaching grief on the neonatal team: professional experience report

Griffin¹,

Pamponet²,

Bella³

et al. 2022

Einstein (São Paulo)

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“…Given the exceptional circumstances facing grieving parents, the authors would maintain that the responsibility of a clinic to provide adequate care to infants and parents does not end when the inpatient stay is concluded. More importantly, it is necessary, even after the death of the child, to offer sufficient support for the family as they reenter everyday life and to provide or initiate a steadfast presence as they make their transition from hospital to home [6,7].…”

Section: Bereavement Support In Perinatologymentioning

confidence: 99%

Psychosocial Support within the Context of Perinatal Palliative Care: The “SORROWFUL” Model

Hude

Garten

2022

Children

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Against the background of a society that tends to underrate the grief experienced by parents whose infants have died prematurely, the model “SORROWFUL” is presented here with the intent to highlight the significance of the death of a newborn for the affected family. It is a supportive tool in counseling for parents grieving the (impending) loss of an infant(s) during peri- or neonatal life and may be implemented within the parental psychosocial support setting beginning with the initial diagnosis until well after the death of the child. The model intentionally allows flexibility for cultural and individual adaptation, for the accommodation to the varying needs of the affected parents, as well as to available local resources.

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“…There has been increasing interest and a growing number of publications with recommendations for perinatal and neonatal palliative care [ 3 , 41 , 44 ]. However, clinical studies are rare [ 45 ] and the evidence supporting the existing perinatal palliative care programs is still scarce [ 46 ]. Most programs have been developed in the USA [ 44 , 47 ] while European perinatal palliative care structures remain poorly developed [ 1 , 45 ].…”

Section: Introductionmentioning

confidence: 99%

The Path Is Made by Walking—Mapping the Healthcare Pathways of Parents Continuing Pregnancy after a Severe Life-Limiting Fetal Diagnosis: A Qualitative Interview Study

Hein¹,

Flaig²,

Schramm³

et al. 2022

Children

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In Germany, research on experiences and care pathways of parents continuing pregnancy after a life-limiting fetal diagnosis is scarce. There are several recommendations but few structured programs. We aimed to explore experiences and needs of parents, reconstruct their care pathways, and identify requirements for a perinatal palliative care program. We conducted semi-structured interviews with 11 mothers and 9 fathers and analyzed data using the Saldaña’s Coding Method. Codes were organized in templates to reconstruct care pathways. Pathways started with a suspicious finding prompting a referral to prenatal diagnostics. Parents experienced severe emotional distress during prenatal diagnostics due to scarce information, insensitiveness, and a perceived pressure towards abortion. As a result, they overlooked referrals to psychosocial counseling, generating a care gap. Most parents reached the decision to continue pregnancy without professional support. They then chose a trusted midwife or gynecologist as main caregiver during pregnancy. There were no regular referrals to palliative care, which mainly became relevant when the child survived. Our data indicate that a perinatal palliative care program requires early and comprehensive information, sensitivity, and a non-directive approach. Already existing support services need to be identified and connected through structured pathways, with a particular focus on midwives.

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Palliative Care and Grief Counseling in Peri- and Neonatology: Recommendations From the German PaluTiN Group

Cited by 13 publications

References 109 publications

The impact of approaching grief on the neonatal team: professional experience report

The impact of approaching grief on the neonatal team: professional experience report

Psychosocial Support within the Context of Perinatal Palliative Care: The “SORROWFUL” Model

The Path Is Made by Walking—Mapping the Healthcare Pathways of Parents Continuing Pregnancy after a Severe Life-Limiting Fetal Diagnosis: A Qualitative Interview Study

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