Search

Family support services

Authors 

Westrup B, Kuhn P, Daly M, Guerra P, Bertoncelli N, Damhuis G, Lilliesköld S, Slinning K, Warren I

© Quirin Leppert

User group

Healthcare professionals, neonatal units, hospitals, and health services

Statement of standard

The family receives care in an environment where their socioeconomic, mental health, and spiritual needs are supported.

Rationale

Neonatal care should include comprehensive family support services, including staff trained in family-centred care, facilities for family life (e.g., sibling area, laundry, meals), psychosocial support, links to pastoral services for spiritual support, peer-to-peer support (e.g. from parent associations), and facilities that allow for mother’s medical care to be coupled with that of their infants to avoid separation. (1)

There are compelling reasons for a family supportive environment. Multiple studies report mental health problems in mothers and fathers. (2–10) Research shows benefits of psychosocial support programmes on the well-being of NICU parents (11–13) and siblings (14), during the antepartum period, through the NICU stay and into the post-NICU period.

General principles of infant- and family-centred developmental care include respect for diversity regarding racial, ethnic, spiritual, educational, geographic and socioeconomic backgrounds, cultural and linguistic traditions, and care preferences. (15,16) Improving communication may increase the involvement of minority populations in family-centred care. (17)

The NICU environment can be traumatic for siblings (18) as well as parents. Barriers to the presence of siblings are common (19) but sibling support programmes have been reported to promote family well-being and infant-sibling attachment, and to decrease sibling anxiety. (20)

There is a range of self-assessment and external review programmes (21–24), available to assess the family support aspects in neonatal care. Units should use a relevant tool to assess and benchmark their status. Parents can also assess parental perception of care delivered using similar tools. (25)

Benefits

Short-term benefits

  • Reduced length of hospital stay (12,26,27)
  • Improved neurodevelopmental outcomes at discharge (28)
  • Enhanced maternal attachment behaviour in the postpartum period (29,30)
  • Improved pleasure in interaction with the infant (30)
  • Improved parental learning to recognise and adequately respond to infants’ behavioural and social signals (31–33)
  • Facilitated process of becoming a parent during NICU stay (10,12,34)
  • Enhanced parental confidence and reduced parental stress (35)

Long-term benefits

  • Improved neurodevelopmental outcomes (36–41)
  • Improved emotional well-being of infants at home (42)
  • Improved cognitive development at ten years of life (29)
  • Better child physiologic stability at ten years of life (29)
  • Higher quality of parent-infant interaction (29,43)
  • Improved emotional well-being of parents at home (10,42)
  • Reduced maternal depression and/or anxiety (12,29)

 

Components of the standard

Component Grading of evidence Indicator of meeting the standard
For parents and family    
1. Parents and families are informed by healthcare professionals about family support services available. (1,13,44) A (Moderate quality)
B (High quality)
Patient information sheet
       
For healthcare professionals    
2. Unit guidelines on family support services are adhered to by all healthcare professionals. (1,13,44) A (Moderate quality)
B (High quality)
Guideline
       
3. Healthcare professionals are informed about family support services. B (High quality) Training documentation
       
For neonatal unit    
4. Unit guidelines are available and regularly updated to cover:

  • Socio-economic support by social worker (1,13,44)
  • Psychological support and referrals to mental health specialists (1,13,44)
  • Arrangements for pastoral/spiritual support (1,13,44)
  • Postpartum care for mothers with admitted infants (1,13,44)
  • Family daily activities (e.g. sibling area, laundry) (1,13,44)
  • Regular psycho-social grand rounds (1,13,44)
  • Parent associations available for support
A (Moderate quality)
B (High quality)
Guideline
       
5. Annual self-assessment regarding infant- and family-centred developmental care, with regular assessment of parent experiences and satisfaction is undertaken. (21–25) A (Moderate quality)
B (High quality)
Audit report
       
For hospital    
6. Hospital guidelines are established and regularly updated on the topics named in component 4. A (Moderate quality)
B (High quality)
Guideline
       
For health service    
7. National guidelines are available and regularly updated on the provision of socioeconomic, psychological, pastoral, and parent associations’ support. (1,13,44) A (Moderate quality)
B (High quality)
Guideline
       

Where to go

Further development Grading of evidence
For parents and family  
N/A  
For healthcare professionals  
N/A  
For neonatal unit  
  • Provide mental health screening.
B (Moderate quality)
  • Offer a physical bed space for mothers in need of medical care in the NICU. (1)
A (Moderate quality)
B (Moderate quality)
  • Conduct NIDCAP Nursery Assessment and Certification. (22)
A (Moderate quality)
B (Moderate quality)
For hospital  
N/A  
For health service  
  • Develop structures to facilitate couplet care. (1,13,44)
A (Moderate quality)
B (High quality)
   

Getting started

Initial steps
For parents and family
  • Parents and families are verbally informed by healthcare professionals about services offered by social workers and psychologists, and postpartum care for mothers with admitted infants, peer-to-peer support and of facilities for family daily activities.
  • Parents are encouraged by healthcare professionals to use peer-to-peer support by parent associations.
For healthcare professionals
  • Attend training on family support services.
For neonatal unit
  • Develop and implement a unit guideline to cover the provision of:
    • Socio-economic support by social worker (1,13,44)
    • Psychological support and referrals to mental health specialists (1,13,44)
    • Arrangements for pastoral/spiritual support (1,13,44)
    • Postpartum care for mothers with admitted infants (1,13,44)
    • Family daily activities (e.g. sibling area, laundry) (1,13,44)
    • Regular psycho-social grand rounds (1,13,44)
    • Parent associations available for support
  • Develop information material on family support services for parents.
For hospital
  • Support healthcare professional to participate in training on family support services.
  • Support provision of social work, psychology, pastoral/spiritual, and parent association input into neonatal care.
For health service
  • Develop and implement a national guideline on the provision of socioeconomic, psychological, pastoral, and parent associations’ support. (1,13,44)
  • Authorise for parent associations support.
 

 

Sources

  1. Westrup B. Family-centered developmentally supportive care: the Swedish example. Arch Pediatr. Oktober 2015;22(10):1086–91.
  2. Holditch-Davis D, Miles MS, Weaver MA, Black B, Beeber L, Thoyre S, u. a. Patterns of distress in African-American mothers of preterm infants. J Dev Behav Pediatr JDBP. Juni 2009;30(3):193–205.
  3. Greene MM, Rossman B, Patra K, Kratovil AL, Janes JE, Meier PP. Depression, anxiety, and perinatal-specific posttraumatic distress in mothers of very low birth weight infants in the neonatal intensive care unit. J Dev Behav Pediatr JDBP. Juni 2015;36(5):362–70.
  4. Hynan MT, Mounts KO, Vanderbilt DL. Screening parents of high-risk infants for emotional distress: rationale and recommendations. J Perinatol Off J Calif Perinat Assoc. Oktober 2013;33(10):748–53.
  5. Kim WJ, Lee E, Kim KR, Namkoong K, Park ES, Rha D–. Progress of PTSD symptoms following birth: a prospective study in mothers of high-risk infants. J Perinatol Off J Calif Perinat Assoc. August 2015;35(8):575–9.
  6. Montirosso R, Fedeli C, Del Prete A, Calciolari G, Borgatti R, NEO-ACQUA Study Group. Maternal stress and depressive symptoms associated with quality of developmental care in 25 Italian Neonatal Intensive Care Units: a cross sectional observational study. Int J Nurs Stud. Juli 2014;51(7):994–1002.
  7. Muller-Nix C, Forcada-Guex M, Pierrehumbert B, Jaunin L, Borghini A, Ansermet F. Prematurity, maternal stress and mother-child interactions. Early Hum Dev. September 2004;79(2):145–58.
  8. Huhtala M, Korja R, Lehtonen L, Haataja L, Lapinleimu H, Rautava P, u. a. Associations between parental psychological well-being and socio-emotional development in 5-year-old preterm children. Early Hum Dev. März 2014;90(3):119–24.
  9. Candelori C, Trumello C, Babore A, Keren M, Romanelli R. The experience of premature birth for fathers: the application of the Clinical Interview for Parents of High-Risk Infants (CLIP) to an Italian sample. Front Psychol. 2015;6:1444.
  10. Provenzi L, Santoro E. The lived experience of fathers of preterm infants in the Neonatal Intensive Care Unit: a systematic review of qualitative studies. J Clin Nurs. Juli 2015;24(13–14):1784–94.
  11. Kazak AE, Kassam-Adams N, Schneider S, Zelikovsky N, Alderfer MA, Rourke M. An integrative model of pediatric medical traumatic stress. J Pediatr Psychol. Mai 2006;31(4):343–55.
  12. Melnyk BM, Feinstein NF, Alpert-Gillis L, Fairbanks E, Crean HF, Sinkin RA, u. a. Reducing premature infants’ length of stay and improving parents’ mental health outcomes with the Creating Opportunities for Parent Empowerment (COPE) neonatal intensive care unit program: a randomized, controlled trial. Pediatrics. November 2006;118(5):e1414-1427.
  13. Benzies KM, Magill-Evans JE, Hayden KA, Ballantyne M. Key components of early intervention programs for preterm infants and their parents: a systematic review and meta-analysis. BMC Pregnancy Childbirth. 2013;13 Suppl 1:S10.
  14. Levick J, Quinn M, Holder A, Nyberg A, Beaumont E, Munch S. Support for siblings of NICU patients: an interdisciplinary approach. Soc Work Health Care. 2010;49(10):919–33.
  15. Harrison TM. Family-centered pediatric nursing care: state of the science. J Pediatr Nurs. Oktober 2010;25(5):335–43.
  16. COMMITTEE ON HOSPITAL CARE and INSTITUTE FOR PATIENT- AND FAMILY-CENTERED CARE. Patient- and family-centered care and the pediatrician’s role. Pediatrics. Februar 2012;129(2):394–404.
  17. Guerrero AD, Chen J, Inkelas M, Rodriguez HP, Ortega AN. Racial and ethnic disparities in pediatric experiences of family-centered care. Med Care. April 2010;48(4):388–93.
  18. Camhi C. Siblings of premature babies: Thinking about their experience. Infant Obs. Dezember 2005;8(3):209–33.
  19. Greisen G, Mirante N, Haumont D, Pierrat V, Pallás-Alonso CR, Warren I, u. a. Parents, siblings and grandparents in the Neonatal Intensive Care Unit. A survey of policies in eight European countries. Acta Paediatr Oslo Nor 1992. November 2009;98(11):1744–50.
  20. Doll-Speck L, Miller B, Rohrs K. Sibling education: implementing a program for the NICU. Neonatal Netw NN. Juni 1993;12(4):49–52.
  21. Hall SL, Phillips R, Hynan MT. Transforming NICU Care to Provide Comprehensive Family Support. Newborn Infant Nurs Rev. Juni 2016;16(2):69–73.
  22. Hedlund R. E. NIDCAP Nursery Assessment and Certification Program [Internet]. Verfügbar unter: http://nidcap.org/en/contact-us/nidcap-certification-program/
  23. Stewart K. National Action and Good Practice Conference including launch of Bliss Family Friendly Accreditation Scheme. J Neonatal Nurs. Oktober 2013;19(5):247.
  24. Dyke P, Buttigieg P, Blackmore AM, Ghose A. Use of the measure of process of care for families (MPOC-56) and service providers (MPOC-SP) to evaluate family-centred services in a paediatric disability setting. Child Care Health Dev. März 2006;32(2):167–76.
  25. Latour JM, Duivenvoorden HJ, Hazelzet JA, van Goudoever JB. Development and validation of a neonatal intensive care parent satisfaction instrument. Pediatr Crit Care Med J Soc Crit Care Med World Fed Pediatr Intensive Crit Care Soc. September 2012;13(5):554–9.
  26. Ortenstrand A, Westrup B, Broström EB, Sarman I, Akerström S, Brune T, u. a. The Stockholm Neonatal Family Centered Care Study: effects on length of stay and infant morbidity. Pediatrics. Februar 2010;125(2):e278-285.
  27. Hall SL, Cross J, Selix NW, Patterson C, Segre L, Chuffo-Siewert R, u. a. Recommendations for enhancing psychosocial support of NICU parents through staff education and support. J Perinatol Off J Calif Perinat Assoc. Dezember 2015;35 Suppl 1:S29-36.
  28. Ohlsson A, Jacobs SE. NIDCAP: a systematic review and meta-analyses of randomized controlled trials. Pediatrics. März 2013;131(3):e881-893.
  29. Feldman R, Rosenthal Z, Eidelman AI. Maternal-preterm skin-to-skin contact enhances child physiologic organization and cognitive control across the first 10 years of life. Biol Psychiatry. 1. Januar 2014;75(1):56–64.
  30. Gathwala G, Singh B, Balhara B. KMC facilitates mother baby attachment in low birth weight infants. Indian J Pediatr. Januar 2008;75(1):43–7.
  31. Roller CG. Getting to know you: mothers’ experiences of kangaroo care. J Obstet Gynecol Neonatal Nurs JOGNN. April 2005;34(2):210–7.
  32. Mörelius E, Broström EB, Westrup B, Sarman I, Örtenstrand A. The Stockholm Neonatal Family-Centered Care Study: effects on salivary cortisol in infants and their mothers. Early Hum Dev. Juli 2012;88(7):575–81.
  33. Kymre IG, Bondas T. Balancing preterm infants’ developmental needs with parents’ readiness for skin-to-skin care: a phenomenological study. Int J Qual Stud Health Well-Being. 11. Juli 2013;8:21370.
  34. Kozlowski JL, Lusk P, Melnyk BM. Pediatric Nurse Practitioner Management of Child Anxiety in a Rural Primary Care Clinic With the Evidence-Based COPE Program. J Pediatr Health Care Off Publ Natl Assoc Pediatr Nurse Assoc Pract. Juni 2015;29(3):274–82.
  35. Kaaresen PI, Rønning JA, Ulvund SE, Dahl LB. A randomized, controlled trial of the effectiveness of an early-intervention program in reducing parenting stress after preterm birth. Pediatrics. Juli 2006;118(1):e9-19.
  36. Kleberg A, Westrup B, Stjernqvist K. Developmental outcome, child behaviour and mother-child interaction at 3 years of age following Newborn Individualized Developmental Care and Intervention Program (NIDCAP) intervention. Early Hum Dev. Dezember 2000;60(2):123–35.
  37. Westrup B, Böhm B, Lagercrantz H, Stjernqvist K. Preschool outcome in children born very prematurely and cared for according to the Newborn Individualized Developmental Care and Assessment Program (NIDCAP). Acta Paediatr Oslo Nor 1992. April 2004;93(4):498–507.
  38. Peters KL, Rosychuk RJ, Hendson L, Coté JJ, McPherson C, Tyebkhan JM. Improvement of short- and long-term outcomes for very low birth weight infants: Edmonton NIDCAP trial. Pediatrics. Oktober 2009;124(4):1009–20.
  39. Welch MG, Firestein MR, Austin J, Hane AA, Stark RI, Hofer MA, u. a. Family Nurture Intervention in the Neonatal Intensive Care Unit improves social-relatedness, attention, and neurodevelopment of preterm infants at 18 months in a randomized controlled trial. J Child Psychol Psychiatry. November 2015;56(11):1202–11.
  40. Zhang X, Kurtz M, Lee S-Y, Liu H. Early Intervention for Preterm Infants and Their Mothers: A Systematic Review. J Perinat Neonatal Nurs. 18. November 2014;
  41. Als H, Gilkerson L, Duffy FH, McAnulty GB, Buehler DM, Vandenberg K, u. a. A three-center, randomized, controlled trial of individualized developmental care for very low birth weight preterm infants: medical, neurodevelopmental, parenting, and caregiving effects. J Dev Behav Pediatr JDBP. Dezember 2003;24(6):399–408.
  42. Mörelius E, Örtenstrand A, Theodorsson E, Frostell A. A randomised trial of continuous skin-to-skin contact after preterm birth and the effects on salivary cortisol, parental stress, depression, and breastfeeding. Early Hum Dev. Januar 2015;91(1):63–70.
  43. Korja R, Latva R, Lehtonen L. The effects of preterm birth on mother-infant interaction and attachment during the infant’s first two years. Acta Obstet Gynecol Scand. Februar 2012;91(2):164–73.
  44. Montirosso R, Tronick E, Borgatti R. Promoting Neuroprotective Care in Neonatal Intensive Care Units and Preterm Infant Development: Insights From the Neonatal Adequate Care for Quality of Life Study. Child Dev Perspect. März 2017;11(1):9–15.

November 2018 / 1st edition / next revision: 2023

Recommended citation

EFCNI, Westrup B, Kuhn P et al., European Standards of Care for Newborn Health: Family support services. 2018.

For the purpose of evaluation, we would be grateful if you could send us details on your profession and country. This information is optional, anonymous and the data processed will exclusively be used for the aforementioned purpose, in line with Article 6, Para. 1 lit. a GDPR (General Data Protection Regulation).

Thank you for your support!