Global Survey on Newborns' HOspitalisation and Parental Experiences
Conditions: Infant, Premature, Infant, Low Birth Weight, Parents, Life Change Events, Needs Assessment, Anxiety, Fear, Stress, Psychological, Uncertainty, Emotions, Caregiver Burden
Sponsor: Global Foundation for the Care of Newborn Infants

 
 
 
  
 
 
 
Global survey on  
newborns’ HOspitalisation and Parental Experiences 
 
 
Brief Title: 
HOPE study 
– 
 
Study protocol and statistical analysis plan 
 
 
 
 
 
 
 
Study Protocol Version 4 (03.04.2025) 
 
 
 
 
 

 
 
 
 
 
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Table of content 
1. 
Study Synopsis ............................................................................................................... 3 
2. 
Background ..................................................................................................................... 6 
3. 
Aim .................................................................................................................................. 6 
4. 
Study Design and Methods ............................................................................................. 7 
4.1 
Collaboration partners, expert working groups and their roles ..................................... 7 
4.2 
Development of the Questionnaire ............................................................................... 7 
4.3 
Study population and inclusion/ exclusion criteria ........................................................ 7 
4.4 
Sample size ................................................................................................................. 7 
4.5 
Recruitment of study participants ................................................................................10 
4.6 
Study outcomes and analysis .....................................................................................10 
4.7 
Ethics and data collection ...........................................................................................11 
4.8 
Statistical analyses .....................................................................................................12 
4.9 
Dissemination of results ..............................................................................................12 
Appendices ...........................................................................................................................15 
Appendix A ........................................................................................................................15 
Appendix B ........................................................................................................................17 
 
 
 
 

 
 
 
 
 
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1. Study Synopsis 
 
Funding organisation 
Global Foundation for the Care of Newborn Infants 
(GFCNI) 
Protocol Title 
Global survey on   
newborns’ HOspitalisation and Parental Experiences 
Short Title 
 HOPE study  
Study Aim(s) 
Study aims are to  
• 
explore parents’ experiences, needs, concerns, 
social and emotional burdens and perceived stress 
related to the hospitalisation of their newborns,  
• 
explore the presence and implementation of 
IFCDC principles and support through political 
framework conditions, 
• 
identify areas in need for improvement for 
individual countries and provide country-specific 
guidance to advance structural frameworks if 
required. 
Design 
• 
Retrospective cross-sectional survey 
• 
Multinational, multilingual online survey, using a 
web-based online questionnaire 
Inclusion criteria 
• 
Parents and caregivers of newborn infant born on 
January 1, 2023, or thereafter, who received 
special/intensive care starting within the first week 
of life such as oxygen therapy or other respiratory 
support, incubator treatment, intravenous infusions, 
treatment of (suspected) sepsis, pneumonia, 
necrotising enterocolitis, malformations, jaundice, 
nutritional/feeding problems, hypoglycaemia, etc. 
Exclusion criteria 
• 
Other family members than parents/(primary) 
caregivers 
• 
Parents of newborns that did not receive 
special/intensive care  
• 
Parents or caregivers of infants born before 
January 1, 2023 

 
 
 
 
 
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Study sample 
• 
We aim to reach as many parents/caregivers as 
possible who respond in the timeframe of data 
collection (6 months).  
• 
Minimum of 25 responders per country from at least 
30 countries (no upper limit). 
Recruitment procedures 
Multi-level recruitment strategy including sharing the 
survey access via 
• 
GFCNI’s parent network 
• 
GFCNI’s social media channels 
• 
GFCNI’s newsletter 
• 
Confirmed supporting experts (n = 76) from 
worldwide 
• 
Confirmed collaboration partners (n = 7) 
Trial intervention(s) 
This is not an interventional trial but an observational 
study 
Main Outcome measures 
• 
Number of respondents 
• 
Baseline characteristics, socio-demographic 
characteristics  
• 
Qualitative and quantitative data of parent’s 
experiences, concerns and unmet needs related to 
the hospitalisation of their infant  
• 
Qualitative and quantitative data of parent’s 
experiences related to implementation of infant 
and family-centred developmental care (IFCDC)  
principles 
• 
Qualitative and quantitative data of parent’s 
experiences related to infrastructural, social and 
political barriers and supportive measures 
Additional Outcome measures 
• 
Evaluation data of the pre-testing to re-fine the 
questionnaire 
• 
Country-specific information and comparisons 
regarding outcomes  
• 
Sub-group specific results from parents/caregivers 
of SGA, preterm and sick newborns regarding 
outcomes 
• 
Sub-group specific results related to different 
length of stay 

 
 
 
 
 
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Statistical Analysis 
• 
Descriptive statistics with standard statistical tests 
if applicable  
• 
Qualitative analysis with testimonials of open-text 
fields. Sub-group analysis related to different 
length of stay 
• 
Tabular and graphical mapping of number of 
responses broken down by geographical region 
(continent and country)  
• 
Non-completer analyses  
• 
Drop-out analyses  
• 
Subgroup analyses related to preterm, sick and 
SGA infants 
• 
Subgroup analyses related to countries and 
continents 
Ethics 
The ethics committee of the Maastricht University UMC+ 
(Netherlands) waived the need for a formal ethical 
approval (METC 2024-0411). Informed consent will be 
obtained from all participants prior to study participation. 
Study registration 
This study has been registered at www.ClinicalTrials.gov 
(NCT06827028). 
 
 
 

 
 
 
 
 
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2. Background 
Newborns who are born too soon (<37+0 weeks’ gestation), too small (< 2500 g birth weight; 
SGA), or acutely sick are a very vulnerable group of patients (1,2); and rates of preterm birth 
(4% to 16%) and low birthweight (4% to above 20%) highly vary across countries. Preterm birth 
is the most common cause of death in children aged under five years (3–7). During the last 
decades neonatal mortality has improved (4,5); however, the required specialised care to 
prevent mortality, to support adequate growth and development, and to reduce the risk of 
morbidities in later life is extremely challenging, especially for parents and is accompanied by 
a tremendous social and economic burden (8,9). Irrespectively being born preterm, small and 
sick may have lifelong medical and social consequences (2,10). The underlying situation is an 
extreme psychological burden for parents and caregivers.  
Applying an infant and family-centred developmental care (IFCDC) approach is considered to 
be beneficial for the growth and development of hospitalised newborns and for their families, 
and is associated with long-term benefits (11,12). During the last decade IFCDC elements have 
been gradually introduced in many neonatal units around the world (11,13), however not 
systematically. Albeit initiatives, such as the European Standards of Care for Newborn Health 
(ESCNH) that made IFCDC as one central element of uniform reference standards for 
evidence-based and high-quality neonatal care (14), the implementation of IFCDC needs to be 
improved in many sites across the world (15). The place of birth remains decisive for long-term 
health outcomes which clearly demonstrates heterogeneity in care provision and inequity in 
terms of access to optimal specialised care (16,17). In addition, there are differences in 
infrastructural, political and social framework conditions for parents’ rights and supportive 
measures during pregnancy and especially during the time of their infants’ hospitalisation and 
beyond. This indicates that parents and caregivers across the globe face different challenges 
and barriers related to the care of their hospitalised newborn and during follow-up. While we 
maintain advocating for IFCDC principles as integral of optimal care provision for preterm, small 
and sick newborns, there is a general lack of information about global implementation of IFCDC 
principles and country-specific comparisons related to their implementation in neonatal care. 
Moreover, it is not transparent which social and political frameworks are established on the 
country level to support parents during the hospitalisation of their newborn infants, and how 
parents in different countries perceive the implementation/omission of deliberately supportive 
measures.  
Therefore, we aim to conduct a multi-national, multi-lingual, online survey among parents to 
assess their experiences, needs, concerns, social and emotional burdens and perceived stress 
related to the hospitalisation of their newborn infants, the presence and implementation of 
IFCDC principles and the support available through political framework conditions. The overall 
goal is to identify areas in need for improvement for individual countries and provide country-
specific guidance to advance structural frameworks if required.  
3. Aim 
With this multi-national, multi-lingual, online survey, we aim to explore parents’ experiences, 
needs, concerns, social and emotional burdens and perceived stress related to the 
hospitalisation of their newborns, the presence and implementation of IFCDC principles and 
support through political framework conditions. The overall goal is to identify areas in need for 
improvement in individual countries and provide tailored country-specific guidance to advance 
structural and social frameworks as necessary. 

 
 
 
 
 
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4. Study Design and Methods 
The study will be designed as an observational cross-sectional survey using a self-
administered, web-based questionnaire for retrospective data collection. The study will use a 
multi-lingual, multi-national online questionnaire collecting data from parents worldwide whose 
newborn infant was hospitalised. 
4.1 Collaboration partners, expert working groups and their roles 
This project will be carried out in close collaboration with representatives of national parent 
organisations and professional healthcare societies. The following societies are involved as 
collaboration partners: ANA (African Neonatal Association), CNN (Canadian Neonatal 
Network), COINN (Council of International Neonatal Nurses), ESPR (European Society for 
Paediatric Research), NFI (NIDCAP Federation International), UENPS (Union of European 
Neonatal and Perinatal Societies), WHO Collaborating Centre for Maternal and Child Health. 
All collaboration partners delegate one representative that supports the Core Working Group 
(CWG). 
The CWG, with n=27 members, and a Support Group (SG), with n=48 members, both 
consisting of individual multi-professional experts from all continents working in the field of 
maternal and newborn health, will be assembled. Both groups support the development of the 
questionnaire in a two-step approach, translations of the questionnaire, the recruitment of 
participants, data analysis, data interpretation, and publication and dissemination of results. 
While the CWG, will be actively involved in the initial development of the draft questionnaire, 
the SG will be involved for a broader review for the revision and final correction of the 
questionnaire in a second step (Figure 1).  
 
4.2 Development of the Questionnaire 
For this purpose of this study, we performed a scoping review (18) to explore the available 
literature related to this topic and to identify the most relevant topics to be included in the 
questionnaire.  
After this literature research, the questionnaire was drafted considering the already existing 
and validated EMPATHIC-N and the PICKER questionnaires (19,20), as well as the 
questionnaire, we previously developed to explore parents’ experiences related to challenges 
during the COVID-19 pandemic regarding the care of their newborns (21,22). In addition, 
questions related to political, social and infrastructural framework conditions were included.  
The online questionnaire includes single, multiple choice answer models and some open-text 
fields. Besides questions related to participant characteristics such as age, sex, country of 
location, infant birthweight, duration of hospitalisation, etc., the questionnaire includes 
questions related to the parents’ perception of political, social and infrastructural framework 
conditions as experienced within their country as well as elements of neonatal care mainly 
involving aspects of IFCDC such as the use and support of breast/human milk and early breast 
feeding, skin-to-skin care (kangaroo-mother care), parental presence and involvement in the 
care, shared decision making, stress and pain control etc. during their hospital stay (details of 
the questionnaire content are outlined in the Appendix A).  

 
 
 
 
 
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In order to maximise the reach and to prevent the loss of study participants due to time 
constraints, a multi-stage approach will be used, beginning with 47 high-priority questions 
(single and multiple answer options), followed by more specific second lower-priority questions 
(single and multiple answer options) (n=21). This first/second layer approach aims to increase 
the response rate for the most important questions and to keep the effort for participants with 
limited time resources to a minimum, while taking advantage of the motivation of participants 
who are willing to share the full scope of their experiences related to their baby’s hospitalisation.  
The questionnaire draft will be reviewed by the CGW and after having implemented necessary 
changes, the updated version will be shared with the larger SG for feedback and review. Both 
groups will ensure that the questionnaire considers the specific national perspective and that 
the questions are phrased sensitively (Figure 1). All implemented changes and the finally 
updated version of the questionnaire will be discussed with both groups including the 
representative from the collaboration partners in digital discussion meetings.  
In addition, comprehensive interviews with up to 10 participants resembling the target group 
will be performed to elucidate other relevant topics that may have not yet been covered and 
need to be included.  
The first questionnaire draft (in English) with included feedback from the interviews and experts 
and will be pre-tested by a comparable target group to receive qualitative feedback on the 
questionnaire per se and the phrasing.  
After a potential adaptation based on data and information of the pre-testing, the questionnaire 
will be translated in as many different languages as feasible to overcome the linguistic barrier 
and facilitate participation for parents worldwide. The CWG and SG will support and review the 
translations. The translated questionnaire versions will be transferred into the online survey 
software SurveyMonkey ® and will be distributed via the expert groups, GFCNI’s network, 
GFCNI’s newsletter and social media channels via an access link. 
 

 
 
 
 
 
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Figure 1: Process of questionnaire development 
4.3 Study population and inclusion/exclusion criteria 
The target group includes parents or caregivers of newborns worldwide who were born as of 
January 1, 2023, and received special/intensive care e.g. preterm born, acutely sick and SGA. 

 
 
 
 
 
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Inclusion criteria  
The target group are parents and caregivers eligible for participation if they fulfil the following 
inclusion criteria:  
• 
Being a parent or caregiver of a  
o newborn infant born on January 1, 2023, or thereafter,  
o who received/is receiving special/intensive care staring within the first week of 
life such as oxygen therapy or other respiratory support, incubator treatment, 
intravenous infusions, treatment of (suspected) sepsis, pneumonia, necrotising 
enterocolitis, 
malformations, 
jaundice, 
nutritional/feeding 
problems, 
hypoglycemia, etc.  
Exclusion criteria 
• 
Other family members than parents/(primary) caregivers 
• 
Parents of newborns that did not receive special/intensive care staring within the first 
week of life 
• 
Parents or caregivers of infants born before January 1, 2023 
4.4 Sample size  
It is aimed to reach as many parents/caregivers as possible who respond within the timeframe 
of data collection (between 1 September 2025 and 28 February 2026). The goal is to include a 
minimum of 25 responders per country from at least 30 countries. If less than 
25 responders/country are recruited, the data from that particular country will not be considered 
in the final analysis. 
4.5 Recruitment of study participants 
For recruitment, GFCNI will develop a recruitment toolkit with printable posters, and postcards, 
digital recruitment infographics, and quote cards from peers, all including the survey access 
link. The toolkit will be made available to all supporting experts and collaboration partners.  
Participants will be recruited primarily through social media outreach efforts and online 
advertisements by GFCNI including recurrent newsletter promotion as well as supporting 
partners and experts. 
In addition, the established global network of national and international parent organisations 
and healthcare professional societies will support the recruitment by sharing the content and 
survey access link with their network, consisting of parents across the world. Special emphasis 
will be paid on reaching indigenous populations, migrants and refugees. For this matter, 
national experts will be asked to pay special attention to support the inclusion of particularly 
hard-to-reach communities within their respective country. 
 
4.6 Study outcomes and analysis 
The study outcomes and analyses will be determined by the final questionnaire. We aim to 
include the following outcomes, however, the final decision will rely on the expert discussions. 

 
 
 
 
 
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Main outcomes 
• 
Baseline and socio-demographic characteristics 
• 
Qualitative and quantitative data of parent’s experiences, concerns and unmet needs 
related to the hospitalisation of their newborn infant  
• 
Qualitative and quantitative data of parent’s experiences related to implementation of 
IFCDC principles 
• 
Qualitative and quantitative data of parent’s experiences related to infrastructural, 
social and political barriers and supportive measures 
Analysis and reporting 
• 
Evaluation data of the pre-testing to re-fine the questionnaire 
• 
Country-specific information and comparisons of outcome variables  
• 
Sub-group specific results from parents/caregivers of SGA, preterm and sick 
newborns of outcome variables 
• 
Sub-group specific results related to different length of stay 
• 
Identification of barriers for implementing IFCDC principles 
• 
Identification of the influence of COVID-19 related restriction policies 
 
 
4.7 Ethics and data collection  
The ethics committee of the University of Maastricht, The Netherlands was consulted (Nr: 
METC 2024-0411) and waived the need for a formal ethical approval. The study is registered 
on clinicaltrials.gov and currently reviewed (NCT06827028). 
Data collection, processing and storage will adhere to the general data protection regulation 
and the declaration of Helsinki. The study will follow the Strengthening and Reporting of 
Observational Studies in Epidemiology (STROBE) reporting guideline for cohort studies. 
Prior to the study participation, interested individuals will be informed about the following points: 
• 
background and relevance of the study, 
• 
type and form of data collection (anonymous) and data usage, 
• 
the General Data Protection Regulation (GDPR), voluntariness of participation, 
• 
revocability of consent without disadvantages and without giving reasons, 
• 
the right to ask further questions, and 
• 
the right for information about stored data. 
Participants will be informed about the potential for distressing reactions regarding their 
personal experiences related to the birth and treatment of their newborn infant and will have 
the opportunity to terminate participation in the survey at any time. No financial incentives will 
be provided to the participants.  

 
 
 
 
 
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Participants will be explicitly asked if they have read and understood the provided information 
and to agree thereafter. By clicking on the agree checkbox, they will give their informed consent 
to participate in the study. Data collection will be anonymous. 
 
4.8 Statistical analyses 
An attrition analysis to explore patterns in participants who drop-out within the high-priority and 
lower-priority part will be conducted. Multiple response questions will be analysed as sum of 
answers per answer option (n (%)). Qualitative data from open text-fields will be categorised 
and unified, if possible, and shown as relative frequencies and percentages (n (%)) but also 
with the 1:1 wording.  
The analysis will include descriptive statistics (determinations of frequencies, percentages, and 
continuous variables as mean ± standard deviation / median, interquartile ranges for 
parametric/non-parametric distribution) for background data and collected responses. Fisher’s 
exact test or Chi-square tests will be used for categorical variables, and t-tests and analysis of 
variance and respective tests for non-parametric data to compare potential differences between 
subcategories, where appropriate. 
Tabular and graphical mapping of response rates and broken down by geographical region 
(continent and country) will be done. Non-completer and drop-out analyses will be performed. 
Qualitative analyses will be performed to harmonise and unify – if possible – open-text fields. 
Subgroup analyses are planned to identify differences or congruences in the needs and 
concerns of parents/caregivers from preterm, sick and SGA infants. Additional subgroup 
analyses aim to elucidate differences on the continent and country level. 
Data will be analysed using R Statistical software and MS Excel. Statistical significance will be 
determined with a p<0.05. Since there is no hypothesis to be tested, statistical analysis will be 
descriptive only, and thus no correction for multiple testing is needed.  
4.9 Dissemination of results 
 
Results will be published in scientific journals after peer-review and made publicly available 
(Open Access). A comprehensive project report with all applied subgroup analyses showing 
single-country data will be released. Dissemination activities through the GFCNI network, 
partner organisations, CGW and SG members will follow the scientific publications.  
 
 
 

 
 
 
 
 
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5 References 
1. Nurturing care for early childhood development [Internet]. [cited 2024 Aug 14]. Available 
from: https://www.who.int/publications/i/item/9789241514064 
2. World Health Organization. Survive and thrive: transforming care for every small and sick 
newborn [Internet]. Geneva: World Health Organization; 2019 [cited 2024 Aug 19]. 
Available from: https://iris.who.int/handle/10665/326495 
3. Liu L, Oza S, Hogan D, Chu Y, Perin J, Zhu J, et al. Global, regional, and national causes 
of under-5 mortality in 2000–15: an updated systematic analysis with implications for the 
Sustainable Development Goals. The Lancet. 2016 Dec;388(10063):3027–35.  
4. Euro-Peristat Project. European perinatal health report - Core indicators of the health and 
care of pregnant  women and babies in  Europe from 2015 to 2019 [Internet]. 2024. 
Available from: https://www.europeristat.com/images/Euro-
Peristat_Fact_sheets_2022_for_upload.pdf 
5. Cao G, Liu J, Liu M. Global, Regional, and National Incidence and Mortality of Neonatal 
Preterm Birth, 1990-2019. JAMA Pediatr. 2022 Aug 1;176(8):787.  
6. Low birthweight - UNICEF DATA [Internet]. [cited 2024 Sep 10]. Available from: 
https://data.unicef.org/topic/nutrition/low-birthweight/#status 
7. Preterm birth [Internet]. [cited 2024 Jun 12]. Available from: https://www.who.int/news-
room/fact-sheets/detail/preterm-birth 
8. Mangham LJ, Petrou S, Doyle LW, Draper ES, Marlow N. The cost of preterm birth 
throughout childhood in England and Wales. Pediatrics. 2009 Feb;123(2):e312-327.  
9. Petrou S. The economic consequences of preterm birth during the first 10 years of life. 
BJOG Int J Obstet Gynaecol. 2005 Mar;112 Suppl 1:10–5.  
10. 
Moster D, Lie RT, Markestad T. Long-term medical and social consequences of 
preterm birth. N Engl J Med. 2008 Jul 17;359(3):262–73.  
11. 
Oude Maatman SM, Bohlin K, Lilliesköld S, Garberg HT, Uitewaal-Poslawky I, Kars 
MC, et al. Factors Influencing Implementation of Family-Centered Care in a Neonatal 
Intensive Care Unit. Front Pediatr. 2020;8:222.  
12. 
Westrup B. Family-centered developmentally supportive care: The Swedish example. 
Arch Pédiatrie. 2015 Oct;22(10):1086–91.  
13. 
Ding X, Zhu L, Zhang R, Wang L, Wang TT, Latour JM. Effects of family-centred care 
interventions on preterm infants and parents in neonatal intensive care units: A systematic 
review and meta-analysis of randomised controlled trials. Aust Crit Care. 2019 
Jan;32(1):63–75.  

 
 
 
 
 
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14. 
Lindacher V, Altebaeumer P, Marlow N, Matthaeus V, Straszewski IN, Thiele N, et al. 
European Standards of Care for Newborn Health—A project protocol. Acta Paediatr. 2020 
Dec 22;apa.15712.  
15. 
McDonald R, Moloney W. Improving the Implementation of Family-Centered Care 
Within the Neonatal Care Unit: Empowering Parents to Participate in Infant Care. J Perinat 
Neonatal Nurs. 2023 Sep 1;37(3):242–51.  
16. 
Gissler M, Mohangoo AD, Blondel B, Chalmers J, Macfarlane A, Gaizauskiene A, et 
al. Perinatal health monitoring in Europe: results from the EURO-PERISTAT project. 
Inform Health Soc Care. 2010 Mar;35(2):64–79.  
17. 
Keller M, Lagercrantz H, Merialdi M, Poets C, Saugstad OD. Too little, too late? Why 
Europe should do more for preterm infants. EU Benchmarking Report 2009/2010. Munich: 
European Foundation for the Care of Newborn Infants; 2010.  
18. 
Internet Archive [Internet]. [cited 2024 Sep 3]. Family-centered care in the NICU in a 
global setting : Ayse Duezenli : Free Download, Borrow, and Streaming. Available from: 
https://archive.org/details/osf-registrations-erqf7-v1 
19. 
Gill FJ, Wilson S, Aydon L, Leslie GD, Latour JM. Empowering Parents of Australian 
Infants and Children in Hospital: Translation, Cultural Adaptation, and Validation of the 
EMpowerment of PArents in The Intensive Care-30-AUS Questionnaire. Pediatr Crit Care 
Med. 2017 Nov;18(11):e506–13.  
20. 
Sakonidou S, Kotzamanis S, Tallett A, Poots AJ, Modi N, Bell D, et al. Parents’ 
Experiences of Communication in Neonatal Care (PEC): a neonatal survey refined for real-
time parent feedback. Arch Dis Child - Fetal Neonatal Ed. 2023 Jul;108(4):416–20.  
21. 
Kostenzer J, Rosenstiel-Pulver C von, Hoffmann J, Walsh A, Mader S, Zimmermann 
LJI. Parents’ experiences regarding neonatal care during the COVID-19 pandemic: 
country-specific findings of a multinational survey. BMJ Open. 2022 Apr 1;12(4):e056856.  
22. 
Kostenzer J, Hoffmann J, von Rosenstiel-Pulver C, Walsh A, Zimmermann LJI, Mader 
S. Neonatal care during the COVID-19 pandemic - a global survey of parents’ experiences 
regarding infant and family-centred developmental care. EClinicalMedicine. 2021 
Sep;39:101056.  
 
 
 

 
 
 
 
 
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Appendices 
Appendix A  
 
List of questionnaire content (preliminary) 
 
Baseline characteristics and socio-demographic characteristics 
• 
No. of respondents 
• 
Age of responders 
• 
Gestational age at birth 
• 
Birth weight (g) 
• 
Multiple pregnancy or singleton pregnancy 
• 
Prenatal care visitation 
• 
Pregnancy-related appointments  
• 
Other person (partner/family member) allowed at prenatal care appointments (yes/no) 
• 
Parental education 
• 
Further socio-economic variables of interest 
 
Data related to birth and neonatal care 
• 
Birth mode (vaginal birth/caesarean section) 
• 
Allowance of other person (partner/family member) at birth 
• 
Duration of special/intensive care 
• 
Delivery of supplemental oxygen (yes/no) 
• 
Delivery of continuous positive airway pressure 
• 
Delivery of intubation and mechanical ventilation (yes/no)  
• 
Marriage status  
• 
Provision of adequate health information of the baby  
• 
Provision of adequate health information at discharge related to home aftercare 
• 
Provision of adequate information at discharge related to follow-up appointments 
• 
Provision of adequate information about mental health support  
• 
Mental health support offered  
• 
Open questions 
 
Data on IFCDC principles  
• 
Initiation of skin-to-skin contact  
• 
Frequency of skin-to-skin contact  
• 
Access to the ward  
• 
Duration of visitation time 
• 
Permission to touch the baby in the incubator or infant bed  

 
 
 
 
 
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• 
Permission of other persons to be with the baby 
• 
Involvement of mother in care provision 
• 
Involvement of partner in care provision 
• 
Availability of breastfeeding supported by staff  
• 
Availability of milk sources 
• 
Initiation of breastfeeding or provision of pumped own breast milk  
• 
Open questions 
 
Social and political support/barriers  
• 
Qualitative information on parental leave 
• 
Qualitative information on accommodation provision 
• 
Data on compensation for expenses related to work absence 
• 
Data on compensation for expenses related to the transportation to the hospital 
• 
Data on compensation for expenses related to the accommodation 
• 
Data on compensation for expenses related to the transportation to home 
• 
Financial burden/support 
• 
Open questions 
 
 
 
 
 
 
 

 
 
 
 
 
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Appendix B 
 
Information on Authorship in Scientific Publications related to the HOPE study 
Regarding Authorship GFCNI follows the recommendations given by the International 
Committee of Medical Journal Editors (ICMJE) as described here: ICMJE | Recommendations 
| Defining the Role of Authors and Contributors. An internal Authorship guideline along with the 
ICMJE recommendations is available and can be requested individually.