Neonatal palliative care: perception differences between providers

Niehaus, Jason Z.; Palmer, Megan; Slaven, James E.; Hatton, Amy; Scanlon, Caitlin; Hill, Adam

doi:10.1038/s41372-020-0714-1

Cited by 7 publications

(10 citation statements)

References 22 publications

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“…Every year in the United States, more than 19,000 infants die immediately or shortly after being admitted to the NICU. These statistics confirm the restrictive living conditions in NICUs that lead to infant death (3). More than five million infant deaths occur each year worldwide, 99% of which occur in developing countries.…”

Section: Introductionsupporting

confidence: 60%

“…The existence of distress and unsuitable environment are other factors mentioned. Several nurses stated their main problem was not knowing when to talk about palliative care with the family of a patient with an unknown prognosis (3). Other studies reported the barriers to palliative care in the neonatal intensive care unit include lack of staff training, lack of preparation, disturbing physical space, language problems, and caregiver emotional distress.…”

Section: Discussionmentioning

confidence: 99%

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Barriers to Palliative Care in the Neonatal Intensive Care Unit from Nurses’ Perspective: A Qualitative Study

et al. 2021

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Background: The American Academy of Pediatrics and the National Association of Neonatal Nurses recommend that palliative care be provided as standard care in neonatal intensive care units (NICUs). Objectives: The present study aimed to explain the nurses' experiences of barriers to palliative care in NICUs. Methods: This qualitative study was conducted using the content analysis approach in NICUs of Beheshti and Amin hospitals in Isfahan in 2020. The data were collected using semi-structured in-depth interviews with 12 nurses who had palliative and end-of-life care experiences for infants and families. The nurses were selected using purposive sampling. The duration of each interview varied from 25 to 50 minutes. Data were analyzed using conventional qualitative content analysis conducted inductively with Graham and Lundman’s approach. The criteria proposed by Guba and Lincoln were used to ensure the credibility and reliability of the data. Results: Three main categories were extracted from the data, including unfavorable conditions (subcategorized into “unsuitable physical environment” and “shortage of nurses”), nurse's mental problems (with the subcategories of “nurses’ mental problems in providing neonatal care” and “nurses’ mental problems in providing family care”) and challenges ahead (with the subcategories of "parental presence challenge” and “doctor's instructions challenge”). Conclusions: The findings of the present study revealed the barriers to palliative care for infants and families in NICUs. Given the importance of palliative care in NICUs, effective measures must be taken to overcome these barriers.

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Section: Introductionsupporting

confidence: 60%

Section: Discussionmentioning

confidence: 99%

Barriers to Palliative Care in the Neonatal Intensive Care Unit from Nurses’ Perspective: A Qualitative Study

et al. 2021

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“…It is widely accepted that early palliative care can have a positive impact on the experience of families (Cerratti et al, 2020;Cortezzo et al, 2013;Niehaus et al, 2020) and their bereavement outcomes (Wool & Catlin, 2019). Although most studies found that staff felt prepared for, and enabled to care for neonates with LLLTCs, (Cerratti et al, 2020;Cortezzo et al, 2013Cortezzo et al, , 2019Niehaus et al, 2020;Tucker et al, 2021), some studies highlighted limited palliative care provision for infants, or suggested the needs of babies with LLLTC were not being addressed (Cortezzo et al, 2013;Williams-Reade et al, 2015). Some staff expressed the unique complications around neonatal palliative…”

Section: Liter Ature Re Vie Wmentioning

confidence: 99%

“…advance care planning, family-centered care, fetal medicine, hospice, neonatology, palliative care, prenatal diagnosis care being offered at the beginning of life and although the majority knew palliative care could be offered early, generally this did not occur: …there are definitely some things associated with palliative care that could be started right after the time of diagnosis, or right after the time of birth […] But I think, typically, the majority of it is focused at […] the end of life, when that is closer in sight. (Williams-Reade et al, 2015, p. 181) There is disparity in the confidence of professionals providing palliative care, with many practitioners not having additional training in how to support families of babies with LLLCTs (Cerratti et al, 2020;Cortezzo et al, 2013;Niehaus et al, 2020;Williams-Reade et al, 2015;Wool, 2015;Wool et al, 2016). A lack of policy and guidance within units to assist in the delivery of palliative care was highlighted (Cerratti et al, 2020;Williams-Reade et al, 2015;Wool et al, 2016).…”

Section: Liter Ature Re Vie Wmentioning

confidence: 99%

The role of children's hospices in perinatal palliative care and advance care planning: The results of a national British survey

Tatterton

Fisher

Storton

et al. 2022

J of Nursing Scholarship

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Introduction Perinatal palliative care services are increasingly available globally, offering a range of clinical and psychological support services to families during pregnancy, in the neonatal period and following the death of a baby with a life‐limiting or life‐threatening condition. Little is understood about the role of children's hospice care and how it contributes to effective perinatal palliative care. Design The study aims to answer the question “what is the role of children's hospices in the provision of perinatal palliative care and advance care planning in the United Kingdom?” Methods An electronic survey was sent to all 54 children's hospices in the United Kingdom between May and June 2022. Results Thirty hospices responded, representing 54% of the sector. All regions of all four counties are represented. Numbers of referrals to hospices for perinatal palliative care have increased significantly over the last 5 years. Hospices provide a range of services for families and babies, usually from the point of diagnosis or recognition of a life‐limiting or life‐threatening condition, underpinned with counseling and emotional support. Hospices worked with a range of professionals and services, most commonly fetal medicine and neonatal services. Advance care plans were an important element of effective perinatal palliative care, strengthening parent–professional and interprofessional relationships. Conclusion Children's hospice services play an important and growing role in the perinatal care of babies and families following the diagnosis or recognition of a life‐limiting or life‐threatening condition. The family‐centered approach to care, from a broad, biopsychosocial perspective means that hospices make a unique and meaningful contribution to both the clinical and psychological needs of families. Clinical relevance The family‐centered approach to care, from a broad, biopsychosocial perspective means that hospices make an important contribution to both the clinical needs of babies, and psychological needs of families antenatally, in the neonatal period and after death.

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“…Diante do exposto, torna-se imprescindível que se expanda a compreensão das atribuições dos cuidados paliativos (EAPC, 2013;Niehaus et al, 2020), bem como a integração e o desenvolvimento de protocolos que direcionem o fornecimento dos CP (Carvalhais et al, 2019;Blakeley et al, 2019). Partindo dessa problemática, o presente estudo tem como objetivo compreender as ações desempenhadas pelos neonatologistas de Santa Catarina, frente aos neonatos sem possibilidades curativas.…”

Section: Introductionunclassified

Condutas utilizadas por neonatologistas diante de pacientes sem possibilidades curativas em Santa Catarina no ano de 2021

Machado

Soncini²,

Costanzo

et al. 2022

RSD

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Objetivo: Avaliar as condutas dos neonatologistas na Unidade de Terapia Intensiva Neonatal (UTIN), frente aos neonatos sem possibilidades curativas, comparando com as características sociodemográficas dos profissionais e à existência de diretrizes/protocolos nas UTIN, em Santa Catarina (SC) no ano de 2021. Métodos: Trata-se de um estudo transversal realizado com os neonatologistas das UTIN de SC, no período de março a junho de 2021. A coleta de dados foi realizada através de um questionário eletrônico, construído em escala Likert (n=110). O Teste de Correlação de Spearman foi usado para determinar se a variável conhecimento sobre os cuidados paliativos (CP) neonatais diferia estatisticamente pelas visões, práticas e características sociodemográficas dos participantes da pesquisa, adotando-se nível de significância p ≤ 0,05. Resultados: Do total de participantes, 100% afirmaram a necessidade de obrigatoriedade do treinamento de CP durante a residência médica, 85,5% revelaram divergências na aplicação dos CP, 46,4% consideraram não haver um ambiente propício de UTIN para o fornecimento dos CP, 70% afirmaram que a participação dos pais nas decisões sobre os CP não ocorre. O uso de protocolo nas UTIN (Rho= -0,332) e confiança na aplicação dos CP (Rho= -0,375) apresentaram correlação negativa com a frequência de aplicação dos CP. Conclusão: A frequência de aplicação dos CP influenciou na confiança, no uso de diretrizes e em menos divergências no fornecimento desse cuidado. Ademais, a falta de confiança, de diretrizes e de UTIN com ambiente adequado ratificaram a necessidade de medidas que preencham as lacunas do paliativismo neonatal.

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Neonatal palliative care: perception differences between providers

Cited by 7 publications

References 22 publications

Barriers to Palliative Care in the Neonatal Intensive Care Unit from Nurses’ Perspective: A Qualitative Study

Barriers to Palliative Care in the Neonatal Intensive Care Unit from Nurses’ Perspective: A Qualitative Study

The role of children's hospices in perinatal palliative care and advance care planning: The results of a national British survey

Condutas utilizadas por neonatologistas diante de pacientes sem possibilidades curativas em Santa Catarina no ano de 2021

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