Giving parents support: a randomized trial of peer support for parents after NICU discharge

Fratantoni, Karen; Soghier, Lamia; Kritikos, Katherine; Jacangelo, Juliana; Herrera, Nicole; Tuchman, Lisa; Glass, Penny; Streisand, Randi; Jacobs, Marni

doi:10.1038/s41372-022-01341-5

Cited by 10 publications

(4 citation statements)

References 66 publications

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“…Support groups are a crucial part of NICU in other countries. 52 Social cultural influences need to be evaluated and considered as an additional risk factor while making policies regarding educational interventions post-discharge and follow-up care for High Risk Infants. Additionally, including extended family members in the sessions wherever possible could help to improve the support for parents.…”

Section: Discussionmentioning

confidence: 99%

“…This could be done through creating easier access to the government-provided disability benefits, developing support groups for parents in their respective villages and regular home visits from the HCPs to assess community barriers. Support groups are a crucial part of NICU in other countries 52. Social cultural influences need to be evaluated and considered as an additional risk factor while making policies regarding educational interventions post-discharge and follow-up care for High Risk Infants.…”

Section: Discussionmentioning

confidence: 99%

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Torn between two worlds: parental experiences of neonatal follow-up for infants with hypoxic ischaemic encephalopathy in India–a qualitative study using interpretative phenomenological analysis

et al. 2022

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ObjectiveThis study aimed to understand the barriers and facilitators of a neonatal follow-up programme, as perceived by parents of infants born with hypoxic ischaemic encephalopathy (HIE).DesignThis study applied a qualitative study design using interpretative phenomenological analysis. It included focus group discussions, face-to-face in-depth interviews and telephonic interviews. Data were analysed using thematic content analysis.SettingNeonatal follow-up clinic of a tertiary hospital in South India. The study was conducted between March and December 2020.ParticipantsFive fathers and eight mothers of infants with HIE.ResultsParents of children with HIE are torn between two worlds—an atmosphere of support and one of criticism. Three main themes were identified: (1) neonatal intensive care unit (NICU) stay: distressful versus reassuring experiences; (2) parenthood: supportive versus unsupportive environments; and (3) neonatal follow-up: adherence versus non-adherence.ConclusionParents of children with HIE experience sociocultural barriers in the NICU, after discharge and during the follow-up period. These lead to a complex array of emotional and physical consequences that affect parenting and follow-up care.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Torn between two worlds: parental experiences of neonatal follow-up for infants with hypoxic ischaemic encephalopathy in India–a qualitative study using interpretative phenomenological analysis

et al. 2022

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“…Ultimately 300 participants were enrolled with baseline data collected. Further details on eligibility, assessment, enrolment and randomisation are described elsewhere 21. Data for the current analysis were collected at baseline, before randomisation.…”

Section: Methodsmentioning

confidence: 99%

Sociodemographic risk factors, parental stress and social support in the neonatal intensive care unit

Younge

Jacobs

Tuchman

et al. 2022

Arch Dis Child Fetal Neonatal Ed

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ObjectiveInvestigate relationships among neonatal intensive care unit (NICU) parent demographics, reported stress and social support.DesignCross-sectional observation.SettingTertiary referral NICU in Mid-Atlantic USA.PatientsParents (n=300) in the Giving Parents Support trial at enrolment.MeasuresPsychometric scales measured general stress, parental stress, NICU stress and social support. Demographic variables included education level, health insurance type, race, relationship status, age and gender. Length of stay was used to control for illness severity. Associations and potential modifying effects were evaluated using linear regression.ResultsHaving less than a college degree (b=−2.52, SE=0.91) and female parent gender (b=−3.42, SE=1.47) were associated with lower parental stress scores. Older age in years was associated with higher parental stress scores (b=0.21, SE=0.07) but lower NICU stress scores (b=−0.01, SE=0.01). Greater social support scores were associated with lower scores of general (b=−2.76, SE=0.39) and parental stress (b=−1.71, SE=0.47). Less than a college degree (b=−0.26, SE=0.11), Medicaid insurance (b=−0.43, SE=0.11) and black race (b=−0.56, SE=0.12) were associated with decreased social support scores. Level of social support modified the relationship between education and parental stress, with higher social support decreasing education-based differences in parental stress scores (p=0.049).ConclusionSociodemographic risk factors may not infer stress or risk in the anticipated direction. Practice and future research should focus on identifying and supporting NICU families at high risk for stress and low support.Trial registration numberNCT02643472.

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“…Given the timing of this study during the pandemic, we acknowledge that supports previously in place were temporarily suspended. However, it may be important to consider opportunities for parent-to-parent support while families remain in the NICU to allow parents to connect with other parents of very preterm and NICU grads [18] as the effectiveness of peer-to-peer support after NICU discharge has not been consistently demonstrated [67]. It could be helpful for NICU staff, practitioners, and researchers to develop specific guidance related to family-centered care, both during the infant's stay in the NICU and the transition period.…”

Section: Implications For Practice and Policymentioning

confidence: 99%

Parent Experiences in the NICU and Transition to Home

Spence

Stuyvenberg

Kane

et al. 2023

IJERPH

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Families (n = 12) with infants born at <29 weeks gestation shared their experiences while in the NICU and transitioning home. Parents were interviewed 6–8 weeks after NICU discharge, including some during the acute phase of the COVID-19 pandemic. Findings regarding the parent experience in the NICU were focused around challenges navigating parent-infant separation, social isolation, communication difficulties, limited knowledge of preterm infants, mental health challenges. Parents also discussed supports that were present and supports they wished were present, as well as the impact of COVID-19 on their experiences. In the transition to home, primary experiences included the sudden nature of the transition, anxiety around discharge preparation, and the loss of the support from nursing staff. During the first few weeks at home, parents expressed joy and anxiety, particularly around feeding. The COVID-19 pandemic limited emotional, informational, and physical support to parents and resulted in limited mutual support from other parents of infants in the NICU. Parents of preterm infants in the NICU present with multiple stressors, rendering attending to parental mental health crucial. NICU staff need to address logistical barriers and familial priorities impacting communication and parent-infant bonding. Providing multiple opportunities for communication, participating in caretaking activities, and meeting other families can be important sources of support and knowledge for parents of very preterm infants.

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Giving parents support: a randomized trial of peer support for parents after NICU discharge

Cited by 10 publications

References 66 publications

Torn between two worlds: parental experiences of neonatal follow-up for infants with hypoxic ischaemic encephalopathy in India–a qualitative study using interpretative phenomenological analysis

Torn between two worlds: parental experiences of neonatal follow-up for infants with hypoxic ischaemic encephalopathy in India–a qualitative study using interpretative phenomenological analysis

Sociodemographic risk factors, parental stress and social support in the neonatal intensive care unit

Parent Experiences in the NICU and Transition to Home

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