Greisen G, Latour JM, Verhaest Y, Alfonso E, Bucher HU, Caeymaex L, Cuttini M, Embleton N, Novak M, Nuzum D, Peters J, Rombo K, Wood D
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Target group
Infants, parents, and families
User group
Healthcare professionals, neonatal units, hospitals, and health services
Statement of standard
The rights of infants, parents, and families in difficult decisions are respected by healthcare professionals. The values behind any decisions that may compromise those rights are transparent.
Rationale
The goal of this standard is to ensure that decisions respect the rights of children, parents, and families as far as this is feasible. For infants, the relevant rights related to treatment and care decisions are: The right to a human identity, care and nurture, association with parents, freedom from discrimination and from unnecessary pain. (1,2) The infant is an individual in its own right, but also a child in the custody of the parents and born into a wider family and into a society. (3) When infants are malformed, injured at birth, born preterm or ill and depend on special care for their comfort or survival, then the infant is particularly vulnerable and dependent on help. The family may be in acute psychological and social distress, increasing their vulnerability. This places an ethical duty on healthcare professionals to protect the integrity, dignity and comfort of the infants and their family, as well as supporting the autonomy of parents in their execution of parental custody. There is also a duty to protect privacy, promote equity and prevent discrimination, particularly when discussing ethical issues. (4)
Benefits
Best possible care is provided to infants that is aligned with their clinical situation and therapeutic goals set for them (consensus)
Increased trust of parents and families that their rights are respected (consensus)
Increased transparency allows an open discussion of issues (consensus)
Components of the standard
Component
Grading of evidence
Indicator of meeting the standard
For parents and family
Parents and family are informed by healthcare professionals about the standards enshrined in the UN Convention on the Rights of the Child/the European Association for Children in Hospital Charter or national equivalents. (1)
B (High quality) C (High quality)
Patient information sheet1
For healthcare professionals
The standards enshrined in the UN Convention on the Rights of the Child/the European Association for Children in Hospital Charter or national equivalents are adhered to by all healthcare professionals. (1)
B (High quality) C (High quality)
Parent feedback
The best interests of infants and wishes of parents are respected. There is no discrimination because of age, race, religion, beliefs, gender, or sexual orientation. (1)
B (High quality) C (High quality)
Parent feedback
When the best interests of infants or wishes of parents or families cannot be met the reasons are explicitly documented.
B (Low quality)
Clinical records
For neonatal unit
The adequacy of clinical services for infants is reviewed at regular intervals and any shortcoming declared.
B (Low quality)
Audit report2
For hospital
The standards enshrined in the UN Convention on the Rights of the Child/the European Association for Children in Hospital Charter or national equivalents are ensured.
B (High quality)
Audit report2
The distribution of resources among services for different groups of patients is reviewed at regular intervals to address questions of equity and to prevent discrimination.
B (Low quality)
Audit report2
For health service
Rights of infants, parents, and families are included in the Curricula of the healthcare professional education. (see Education & training)
B (High quality)
Training documentation
1The indicator ‘patient information sheet’ is an example for written, detailed information, in which digital solutions are included, such as web-based systems, apps, brochures, information leaflets, and booklets.
2The indicator ‘audit report” can also be defined as a benchmarking report.
Where to go
Further development
Grading of evidence
For parents and family
N/A
For healthcare professionals
N/A
For neonatal unit
N/A
For hospital
N/A
For health service
N/A
Getting started
Initial steps
For parents and family
Parents and family are verbally informed by healthcare professionals about the standards enshrined in the UN Convention on the Rights of the Child/the European Association for Children in Hospital Charter or national equivalents. (1)
Encourage hospitals to adopt the UN Convention on the Rights of the Child. (1)
For healthcare professionals
Audit service against the UN Convention on the Rights of the Child/the European Association for Children in Hospital Charter (1) or national equivalents.
Identify solutions where rights are compromised.
For neonatal unit
Develop information material about the standards enshrined in the UN Convention on the Rights of the Child/the European Association for Children in Hospital Charter (1) or national equivalents for parents.
Audit service against the UN Convention on the Rights of the Child/the European Association for Children in Hospital Charter (1) or national equivalents.
Identify solutions where rights are compromised.
For hospital
Audit service against the UN Convention on the Rights of the Child/the European Association for Children in Hospital Charter (1) or national equivalents.
Identify solutions where rights are compromised.
For health service
Incorporate the UN Convention on the Rights of the Child (1) in the Curricula of the healthcare professional education. (see Education & training)
Latour JM, Albarran JW. Privacy, dignity and confidentiality: a time to reflect on practice. Nurs Crit Care. 2012 Jun;17(3):109–11.
November 2018 / 1st edition / next revision: 2023
Recommended citation
EFCNI, Greisen G, Latour JM, et al., European Standards of Care for Newborn Health: Rights of infants, parents, and families in difficult decisions. 2018.
