Emotional responses of parents participating for the first time in caregiving for their baby in a neonatal unit

Abstract

Background Parents of term and preterm infants hospitalised at birth experience a stressful situation. They are considered as primary caregivers in neonatal units and are encouraged to participate in their child’s care. Objectives The aim of our study was to analyse the feelings of parents participating for the first time in caregiving for their baby admitted at birth in a neonatal unit in France and to compare the feelings reported by parents of term and preterm infants. Methods An online survey was created in 2014 for parents who had a baby hospitalised at birth. We analysed parents’ responses to this open‐ended question: “How did you feel when you participated in caregiving for your baby for the first time?” using a qualitative discourse analysis by two analysts. Themes were identified and coded. Results Between February 2014 and March 2018, 1603 parents of preterm infants and 239 parents of term infants responded to this open‐ended question. Twenty‐five per cent of parents expressed positive feelings exclusively (confidence, ease, joy, pride, feeling supported by healthcare professionals, by their family and feeling of being a parent), 41% expressed negative feelings exclusively (stress, fear, feeling of being judged, frustration, anger, uselessness and clumsiness) and 34% expressed mixed feelings (both positive and negative). Parents of term infants expressed less frequent feelings of stress and fear than parents of preterm infants: with a relative risk (RR) of 0.69, 95% confidence interval (CI) 0.56, 0.87. Parents of term babies more frequently expressed feelings of frustration: RR 2.40 (95% CI 1.33, 4.32). Conclusions Infant‐ and Family‐Centred Developmental Care supportive programmes are recommended within neonatal units in order to improve the experience of parents participating in caregiving for their baby hospitalised at birth.

Error disclosure in neonatal intensive care: a multicentre, prospective, observational study

“…Over the last 20 years, parents of NICU patients have been increasingly involved as partners in care rather than treated simply as visitors 29 30. This change has resulted, for example, in unlimited parental NICU access,30 their participation in care31 and parent-involving communication during family-centred rounds32; more recently, family integrated care—based on the concept of ‘no parent-baby separation’—has been associated with reduced stress and improved maternal health 33…”

“…Our results show that in one-third of cases professionals stated that their reason for not mentioning the error was to protect the parent from further stress. This choice may be related to the ethical principle of non-maleficence in this context where parents may be vulnerable31 and where stress can negatively affect parent–baby bonding 43. A related argument concerns the fear of undermining trust in the relationship, also described elsewhere,37–39 44 to protect the cooperation required for care.…”

Patient and public involvement in the benefit–risk assessment and decision concerning health products: position of the Scientific Advisory Board of the French National Agency for Medicines and Health Products Safety (ANSM)

“…In this perspective, the International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use has proposed new guidelines to advance patient-centred drug development, integrating patient experience throughout development and thus supporting regulatory decisions 25. The subject of Patient-Reported Outcomes, once validated and effectively aggregated, analysed and verified by the ‘people concerned’, should be addressed as a concrete form of patient involvement in BR assessment 26. Already implemented at national level for health technology assessment, it would be appropriate to integrate them into the marketing authorisation process and thus to develop the European guidelines.…”

Barriers to Kangaroo Care in the NICU

“…Literature describing parent experiences performing KC emphasizes the emotional aspect of the experience. 18 Parents participating in KC report feeling more bonded to their infants and comfortable in their parental role. 19 However, fear of hurting their infant was a prominent listed barrier in studies examining parental responses.…”

“…Literature describing parent experiences performing KC emphasizes the emotional aspect of the experience 18. Parents participating in KC report feeling more bonded to their infants and comfortable in their parental role 19.…”