Socio-family support for parents of technology-dependent extremely preterm infants after hospital discharge

Medina, Isabel María Fernández; Granero-Molina, José; Hernández‐Padilla, José Manuel; Jiménez-Lasserrotte, María del Mar; Fernández, María Dolores Ruiz; Fernández‐Sola, Cayetano

doi:10.1177/1367493521996490

Cited by 6 publications

(1 citation statement)

References 47 publications

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“…"My son came home with a nasogastric tube, there is a nurse in the hospital who is in charge of teaching you how the tube and the feeding pump work, but when you are at home the responsibility is entirely yours, the moment when the nasogastric tube goes outside is very complicated, and you can't be thinking as a parent whether you have put the tube in correctly or not, and if his lung is going to fill up with food… therefore, counting on a professional companion is very important." (Spain, hospital and community)[40] 'I have my in-laws…they are always there, whether it be for moral or practical support.' (Canada, hospital)[39] "I have a lot of responsibilities.…”

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What matters to families about the healthcare of preterm or low birth weight infants: A qualitative evidence synthesis

Hurt

Odd

Mann³

et al. 2022

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Background: Preterm and low birth weight (LBW) infants have complex healthcare needs. In this qualitative evidence synthesis, we aimed to understand what matters to families about the healthcare provided from birth to preterm or LBW infants, to inform appropriate planning and delivery of care. Methods: We searched nine databases and the reference lists of included studies to identify eligible studies that used qualitative methods to examine the views of families relating to healthcare for preterm or LBW infants. Studies in all countries (low, middle, and high-income) and healthcare settings (home, community, primary, secondary and tertiary care) were eligible for inclusion. Study quality was assessed using the Critical Appraisal Skills Programme checklist for qualitative studies. The GRADE-CERQual approach was used to assess confidence in each review finding. Thematic synthesis techniques were used for analysis. Results: 203 studies (in 208 papers) were eligible for inclusion. 49 studies (in 51 papers) from 25 countries were sampled for the analysis, based on pre-specified criteria (methodological quality; data richness; and ensuring representation across continents and from settings with varying resources). Eight analytical themes were identified. What mattered to carers was: a positive outcome for the child; active involvement in care; support to cope at home after discharge; emotional support for the family; the healthcare environment; information needs were met; logistical support was available; and positive relationships with staff. Confidence in most results was high to moderate. Conclusion: We found high consistency in what matters to families regardless of location or resources, even though carers reported a variety of experiences in the care of their preterm or LBW infant. Families views on care in neonatal units have been extensively studied. Further research is needed on what matters to fathers and other family members, and to families receiving community-based care especially in low and middle-income countries.

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