Parents’ ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study
<p><strong>Background</strong></p> <p>Follow-up of very preterm infants is essential for reducing risks of health and developmental problems and relies on parental engagement. We investigated parents’ perceptions of post-discharge healthcare for their children...
| Main Authors: | , , , , , , , , , |
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| Format: | Journal article |
| Language: | English |
| Published: |
Springer Nature
2020
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| _version_ | 1797097496475860992 |
|---|---|
| author | Seppänen, A-V Sauvegrain, P Draper, ES Toome, L Rafei, RE Petrou, S Barros, H Zimmermann, LJI Cuttini, M Zeitlin, J |
| author_facet | Seppänen, A-V Sauvegrain, P Draper, ES Toome, L Rafei, RE Petrou, S Barros, H Zimmermann, LJI Cuttini, M Zeitlin, J |
| author_sort | Seppänen, A-V |
| collection | OXFORD |
| description | <p><strong>Background</strong></p>
<p>Follow-up of very preterm infants is essential for reducing risks of health and developmental problems and relies on parental engagement. We investigated parents’ perceptions of post-discharge healthcare for their children born very preterm in a European multi-country cohort study.</p>
<p><strong>Methods</strong></p>
<p>Data come from a 5-year follow-up of an area-based cohort of births <32 weeks’ gestation in 19 regions from 11 European countries. Perinatal data were collected from medical records and 5-year data from parent-report questionnaires. Parents rated post-discharge care related to their children’s preterm birth (poor/fair/good/excellent) and provided free-text suggestions for improvements. We analyzed sociodemographic and medical factors associated with poor/fair ratings, using inverse probability weights to adjust for attrition bias, and assessed free-text responses using thematic analysis.</p>
<p><strong>Results</strong></p>
<p>Questionnaires were returned for 3635 children (53.8% response rate). Care was rated as poor/fair for 14.2% [from 6.1% (France) to 31.6% (Denmark)]; rates were higher when children had health or developmental problems (e.g. cerebral palsy (34.4%) or epilepsy (36.9%)). From 971 responses, 4 themes and 25 subthemes concerning care improvement were identified.</p>
<p><strong>Conclusions</strong></p>
<p>Parents’ experiences provide guidance for improving very preterm children’s post-discharge care; this is a priority for children with health and developmental problems as parental dissatisfaction was high.</p>
<p><strong>Impact</strong></p>
<ul>
<li>
<p>In a European population-based very preterm birth cohort, parents rated post-discharge healthcare as poor or fair for 14.2% of children, with a wide variation (6.1–31.6%) between countries.</p>
</li>
<li>
<p>Dissatisfaction was reported in over one-third of cases when children had health or developmental difficulties, such as epilepsy or cerebral palsy.</p>
</li>
<li>
<p>Parents’ free-text suggestions for improving preterm-related post-discharge healthcare were similar across countries; these focused primarily on better communication with parents and better coordination of care.</p>
</li>
<li>
<p>Parents’ lived experiences are a valuable resource for understanding where care improvements are needed and should be included in future research.</p>
</li>
</ul> |
| first_indexed | 2024-03-07T04:56:21Z |
| format | Journal article |
| id | oxford-uuid:d6bc54a1-7cfa-47d7-ba3f-1efc9d1bbc97 |
| institution | University of Oxford |
| language | English |
| last_indexed | 2024-03-07T04:56:21Z |
| publishDate | 2020 |
| publisher | Springer Nature |
| record_format | dspace |
| spelling | oxford-uuid:d6bc54a1-7cfa-47d7-ba3f-1efc9d1bbc972022-03-27T08:35:50ZParents’ ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort studyJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:d6bc54a1-7cfa-47d7-ba3f-1efc9d1bbc97EnglishSymplectic ElementsSpringer Nature2020Seppänen, A-VSauvegrain, PDraper, ESToome, LRafei, REPetrou, SBarros, HZimmermann, LJICuttini, MZeitlin, J<p><strong>Background</strong></p> <p>Follow-up of very preterm infants is essential for reducing risks of health and developmental problems and relies on parental engagement. We investigated parents’ perceptions of post-discharge healthcare for their children born very preterm in a European multi-country cohort study.</p> <p><strong>Methods</strong></p> <p>Data come from a 5-year follow-up of an area-based cohort of births <32 weeks’ gestation in 19 regions from 11 European countries. Perinatal data were collected from medical records and 5-year data from parent-report questionnaires. Parents rated post-discharge care related to their children’s preterm birth (poor/fair/good/excellent) and provided free-text suggestions for improvements. We analyzed sociodemographic and medical factors associated with poor/fair ratings, using inverse probability weights to adjust for attrition bias, and assessed free-text responses using thematic analysis.</p> <p><strong>Results</strong></p> <p>Questionnaires were returned for 3635 children (53.8% response rate). Care was rated as poor/fair for 14.2% [from 6.1% (France) to 31.6% (Denmark)]; rates were higher when children had health or developmental problems (e.g. cerebral palsy (34.4%) or epilepsy (36.9%)). From 971 responses, 4 themes and 25 subthemes concerning care improvement were identified.</p> <p><strong>Conclusions</strong></p> <p>Parents’ experiences provide guidance for improving very preterm children’s post-discharge care; this is a priority for children with health and developmental problems as parental dissatisfaction was high.</p> <p><strong>Impact</strong></p> <ul> <li> <p>In a European population-based very preterm birth cohort, parents rated post-discharge healthcare as poor or fair for 14.2% of children, with a wide variation (6.1–31.6%) between countries.</p> </li> <li> <p>Dissatisfaction was reported in over one-third of cases when children had health or developmental difficulties, such as epilepsy or cerebral palsy.</p> </li> <li> <p>Parents’ free-text suggestions for improving preterm-related post-discharge healthcare were similar across countries; these focused primarily on better communication with parents and better coordination of care.</p> </li> <li> <p>Parents’ lived experiences are a valuable resource for understanding where care improvements are needed and should be included in future research.</p> </li> </ul> |
| spellingShingle | Seppänen, A-V Sauvegrain, P Draper, ES Toome, L Rafei, RE Petrou, S Barros, H Zimmermann, LJI Cuttini, M Zeitlin, J Parents’ ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study |
| title | Parents’ ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study |
| title_full | Parents’ ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study |
| title_fullStr | Parents’ ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study |
| title_full_unstemmed | Parents’ ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study |
| title_short | Parents’ ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study |
| title_sort | parents ratings of post discharge healthcare for their children born very preterm and their suggestions for improvement a european cohort study |
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