Rights of infants, parents, and families in difficult decisions

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Authors

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


Components of the standard

Component

Grading of evidence

Indicator of meeting the standard

For parents and family

  1. 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

  1. 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

  1. 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

  1. 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

  1. The adequacy of clinical services for infants is reviewed at regular intervals and any shortcoming declared.

B (Low quality)

Audit report2

For hospital

  1. 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

  1. 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

  1. 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)

  1. UNICEF. The United Nations Convention on the Rights of the Child [Internet]. 1990. Available from: https://downloads.unicef.org.uk/wp-content/uploads/2010/05/UNCRC_united_nations_convention_on_the_rights_of_the_child.pdf?_ga=2.163550268.1218459234.1527076484-403558301.1527076484
  2. Council of Europe. Guidelines on child-friendly health care. 2011; Available from: https://rm.coe.int/168046ccef
  3. Council of Europe. The best interests of the child; a dialogue between theory and practice [Internet]. 2016 [cited 2018 May 23]. Available from: https://rm.coe.int/CoERMPublicCommonSearchServices/DisplayDCTMContent?documentId=0900001680657e56
  4. 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, Oude-Reimer M, Frauenfelder O et al., European Standards of Care for Newborn Health: Inserting and managing feeding tubes. 2018.