Helping Infants With Congenital Heart Defects: Enhancing Parent with Therapist Engagement Through Infant Massage

INTRODUCTION: Infants born with congenital heart defects (CHD) may experience post-operative growth challenges, such as failure to thrive, difficulties with feeding and weight management, and neurodevelopmental impairments (Lambert et al., 2017). Several recent studies have explored the use of touch-based therapies, such as infant massage, to improve developmental outcomes of these fragile infants (Lambert et. al., 2017; Harrison, 2020), but no studies have explored how to promote successful parent engagement in this intervention. There is a need to determine appropriate training and education models to promote successful parent engagement in infant massage for fragile infants with CHD.

PURPOSE: The aim of this needs assessment is to gain an understanding of the parent’s perception of infant massage and to determine the attitudes of healthcare providers who work with infants with CHD in regard to the use of infant massage. This information will inform the development of a parent-focused education model for infants with CHD and their families.

METHOD: This was a prospective study with collection of qualitative and quantitative data through interviews, chart reviews, observation in the newborn nursery, and surveys. Participants included 1) healthcare providers (OT/PT/SLP, Nursing) and 2) parents of infants with CHD. Questions focused on the potential benefits and challenges for family participation in touch-based interventions such as massage. Results were analyzed through thematic analysis and descriptive statistics of frequency of responses. Results Thirty-seven healthcare professionals participated in the staff-survey, 62% were PCICU nurses, 14% were SLPs, 13% were OTs, and 11% were PTs. Over 90% of the staff agreed that they would like additional information about infant massage (91.9%). The majority of practitioners agreed that infants with CHD can benefit from infant massage (83.8%) and that it can improve the parent-infant bond (89.2%). Unfortunately, the majority of staff disagreed that parents are adequately trained on how to provide infant massage to their infants (59.5%). Interestingly, 100% of SLP reported that they did not have adequate knowledge about infant massage delivered by OTs. Six families of infants with CHD completed in-person interviews. 100% agreed that infant massage is an effective treatment, it helps them bond with their infant, and they will continue infant massage when discharged home. However, 33.3% of families reported they are worried they might harm their infant with massage.

CONCLUSIONS: Touch-based therapy, such as infant massage, is a beneficial therapeutic intervention for infants with cardiac defects and current studies state that it is a safe and feasible intervention for these fragile infants that may be linked to increased physiological outcomes and reduced pain (Lambert et. al., 2017; Harrison, 2020). However, there is a need for additional training and education for family and staff about the purpose of infant massage, procedures and protocols implemented, and how to safely deliver this intervention when the infant is critically ill. Based on the results, OTs who provide touch-based interventions such as massage should educate other healthcare professionals about the benefits of the intervention. In addition, it is important to provide parent education resources to support family-focused participation. These education resources could incorporate 1) verbal instruction, 2) paper handouts, and 3) video and pictures for parents to maximize use of this therapeutic intervention. Parents and therapists may also benefit from participating in an immersive learning workshop to educate on the evidence of this intervention and how to safely deliver to fragile infants with CHD.

References

Harrison, T. M., Brown, R., Duffey, T., Frey, C., Bailey, J., Nist, M. D., Renner, L., & Fitch, J. (2020). Effects of massage on postoperative pain in infants with complex congenital heart disease. Nursing Research, 69(5S Suppl 1), S36–S46. https://doi.org/10.1097/NNR.0000000000000459

Kraversky, D. G. (2019). Occupational performance coaching as an ultimate facilitator. AOTA Continuing Education Article.

Lambert, L. M., Trachtenberg, F. L., Pemberton, V. L., Wood, J., Andreas, S., Schlosser, R., Barnard, T., Daniels, K., Harrington, A. T., Dagincourt, N., Miller, T. A., & Pediatric Heart Network Investigators (2017). Passive range of motion exercise to enhance growth in infants following the Norwood procedure: a safety and feasibility trial. Cardiology in the Young, 27(7), 1361–1368. https://doi.org/10.1017/S1047951117000427