Factors that Contribute to Bereaved Parents’ Perceptions of Neonatal Palliative Care

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Neonatal palliative care (NPC) provides relief for both infants and families of infants with terminal diagnoses. Families play a crucial role in the decision-making process for their infant, but their experiences with and perceptions of the support and care provided to them through NPC is unclear. The literature suggests that clinicians delivering NPC employ a variety of strategies, such as memory making, involvement in decision making, and bereavement support after the infant’s death, to promote infant comfort and facilitate the parent grief process through the end of life. But there is no consensus on the specific factors of NPC that parents need or find most impactful related to their perceived satisfaction with care.

Hamel and Beltran (2022) sought to answer the question, “What are parent experiences with NPC and their perceptions of the factors that contribute to good quality NPC?”  The authors conducted a systematic literature review and identified 16 articles.

The findings were summarized into three themes:

Perceptions of Interactions with Clinicians

  • Communication between parents and clinicians, including honest and transparent communication about the infant’s prognosis while also maintaining hope.
  • Parent involvement in the decision-making process: Transparent and comprehensive education from clinicians to support parents’ decision making. Involvement in decision making is viewed as an important aspect of identity as a parent.
  • Continuity of care among staff.

Perceptions of Interactions Surrounding the Infant

A central need of parents during NPC is to maintain interactions with their infant and feel like a parent. This includes:

  • Maintaining the role of a parent
  • Having quality time with the infant, and
  • Understanding and perceiving the symptoms and potential suffering of their infant.

Parent Interactions with Care and Support for Themselves

  • Support during their stay in the NICU including emotional support provided by NICU staff, religious leaders, social workers and peers.
  • Bereavement support during the grieving process. Bereavement and follow-up support and the opportunity for legacy-leaving for their infant are factors that contributed positively to parents’ satisfaction.

Hamel and Beltran (2022) also highlighted themes where parents’ indicated their needs were not consistently met. Parents indicated that they were not consistently invited to participate in care activities of their infant by all clinicians. The authors pointed to examples of family-centered care protocols in the United States, as well as the experience in Sweden where parents play a large role in caring for their infant in the NICU as positive examples to consider.

Parents indicated a lack of consistent communication with clinicians. This was often related to changing care provider assignments resulting in parents having to repeat their needs to a variety of clinicians which contributed to emotional distress. The authors suggest exploring more consistent provider assignments and regular family meetings, following emerging best practices, with all care providers.

Bereavement support was identified as another area where parents were not always satisfied. This dissatisfaction was related to a “one size fits all” approach, which does not consider the complex nature of the parents’ experience in the NICU. The authors suggest a more personalize approach to bereavement support to increase parent satisfaction.

Source: Hamel, M. N., & Beltran, S. J. (2022). Factors that Contribute to Bereaved Parents’ Perceptions of Neonatal Palliative Care: A Systematic Literature Review. American Journal of Hospice and Palliative Medicine®, 10499091221113277.