Coordination and integration of care after discharge home

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Authors

Cignacco E, Schneider M, Huening B, Wolke D, Obermann S, van Steenbrugge G

© ChameleonsEye / Shutterstock

Target group

Infants born very preterm or those infants with risk factors (see preamble Follow-up & continuing care), parents, and families

User group

Healthcare professionals, neonatal units, hospitals, health services, and follow-up teams

Statement of standard

Parents receive comprehensive, family-centred, and integrated care for their high-risk infant after discharge home.

Rationale

Care programmes for high-risk infants may involve a range of professionals and disciplines. (1,2) Growth, feeding and development are addressed in all infants, and interventions, such as physiotherapy, (preverbal) speech therapy, dietetics and lactation consultancy, occupational therapy, music therapy or psychological support are often instituted. (3–12) Such follow-on care must also integrate with primary, secondary, and tertiary services, such as family physicians, paediatricians, neonatologists, community health nurses and other healthcare professionals. Multidisciplinary collaboration and coordination of care between professionals in different settings is necessary to particularly prevent families from falling through gaps in care after the transition to home and to avoid needless treatment duplication. (13–20) An integrated schedule of follow-up and aftercare visits decreases the burden of unnecessary visits. (21,22)

Timely communication of the medical record among professionals involved is a prerequisite for coordinated care. (18,20,23) Digital systems can facilitate this. (21) Case managers will provide coordination and continuity of care and treatment goals, and facilitate access to appropriate resources for affected families and involved professionals. (16,18,24–26) As there is no uniform approach in follow-up and aftercare programmes (27–29), local guidelines need to be developed about the assignment of tasks between healthcare professionals. (17) The focus of care changes over time from medical problems, feeding and growth, to later development, behaviour, and schooling. Case managers with different backgrounds may be required over time, these may include Nurse Practitioners (NP) or other Advanced Practice Nurses (APN). (17,30) Family-centred care (FCC) and shared decision making are essential for parents of infants with complex needs. Parents are the primary caregivers and advocate for their child; they should be empowered and included as equal partners in the multidisciplinary team. (18,24–26,31–39)

Benefits

Short-term benefits

N/A

Long-term benefits

Components of the standard

Component

Grading of evidence

Indicator of meeting the standard

For parents and family

  1. Healthcare professionals work in partnership with parents to emphasise the importance of providing adequate healthcare for their infant. This collaboration includes informing parents about their child’s condition and care, follow-up programmes and the role of the case manager in supporting their child’s health and well-being. (23,26,39,42,46)

A (Moderate quality)
B (High quality)

Clinical records, patient information sheet1

  1. Parents, as the primary caregivers, are supported by a professional case manager for overview and coordination of the plan for follow-on care.
    (23–25,34,36,37,39,40,43,44,47,48)

A (High quality)
B (High quality)

Audit report2, parent feedback, patient information sheet1

For healthcare professionals

  1. A unit guideline on follow-up management including the support and involvement of the parents by a case manager is adhered to by all healthcare professionals. (28,49)

A (Low quality)
B (High quality)

Guideline

  1. Training on specific needs of high-risk infants in general and follow-up management is attended by all healthcare professionals and case managers to facilitate care for individual infants and families.

B (High quality)

Training documentation

  1. Healthcare professionals continue to facilitate and encourage parental engagement and decision making during follow-up care. (14,16,23–26,33,36,38,39,43,44,47,48,50,51)

A (High quality)
B (High quality)

Guideline, parent feedback

  1. Information exchange between all involved healthcare professionals and parents is documented and monitored. (3,37,41)

A (Low quality)
B (Moderate quality)

Clinical records

  1. Contacts as part of the local follow-up programme are planned and coordinated, and meet the specific needs of the individual infant and family. (3–5,7,41)

A (Low quality)
B (High quality)

Guideline, parent feedback

For neonatal unit and follow-up team

  1. A unit guideline on follow-up programme including the collaboration between the parents and a case manager is available and regularly updated. (3–5,7,43)

A (High quality)
B (High quality)

Guideline

For hospital and follow-up team

  1. Digital resources are utilised to facilitate access to information and support for both parents and professionals.

B (Moderate quality)

Clinical records

  1. Training on specific needs of high-risk infants in general and follow-up management is ensured. (6,43)

A (High quality)
B (High quality)

Training documentation

  1. Appropriate resources and facilities for follow-up programmes are provided to optimise coordination and collaboration between families and healthcare professionals. (3,28,34)

A (Low quality)
B (High quality)

Audit report2

For health service

  1. A national guideline on follow-up management including the involvement and empowerment of the parents is available and regularly updated.

B (High quality)

Guideline

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

  • Parents experience and actively shape FCC by being involved in the child’s care.

B (High quality)

For healthcare professionals

  • Further development and definition of APN/NP role as potential case manager.

B (Moderate quality)

  • Training in FCC model (e.g. shared decision making, specific anamnestic, etc.).

B (High quality)

For neonatal unit and follow-up team

  • Develop the accessibility of follow-up services, using e-health technology to support parents and health professionals. (50,51)

A (Low quality)
B (Moderate quality)

  • Develop the most effective ways of communication between multidisciplinary team members and parents.

B (Moderate quality)

For hospital and follow-up team

N/A

For health service

  • Improve digital communication, integrating patient files and databases to facilitate timely handover and ongoing care. (21)

A (Low quality)

  • Encourage research and policymaking in favour of FCC models.

B (Moderate quality)

Getting started

Initial steps

For parents and family

  • Parents and healthcare professionals discuss the follow-up and follow-on care available for the infant.
  • Parents and healthcare professionals exchange contact details for any questions regarding the infant’s follow-up healthcare.

For healthcare professionals

  • Attend training to improve knowledge on the specific needs of high-risk infants in general and especially training on case management.
  • Ensure timely exchange of medical information and relevant family circumstances.
  • Work towards providing FCC, empowering parents as competent primary care givers.

For neonatal unit and follow-up team

  • Develop and implement a unit guideline for case management that starts prior to discharge.
  • Develop information material about the available follow-up programme for parents.
  • Develop a (paper) form to structure handover of essential medical information.

For hospital and follow-up team

  • Support healthcare professionals and case managers to participate in training and education programmes to improve knowledge on FCC and the specific needs of the high-risk infants including case management.

For health service

  • Develop and implement a national guideline for case management that starts prior to discharge.
  • Develop and implement a policy to enable multi-disciplinary collaboration, synchronisation and necessary exchange of medical records between healthcare professionals and parents at different levels in infant care.

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Second edition, December 2024. Previous edition reviewed by O’Brien F.

Lifecycle

5 years/next revision: 2029

Recommended citation

GFCNI, Cignacco E, Schneider M et al., European Standards of Care for Newborn Health: Coordination and integration of care after discharge home. 2024.

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