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

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.


What is already known on this topic
• Preterm and low birthweight births are a major cause of poor health globally.
• Despite advances in neonatal care, preterm and low birthweight infants often require complex and prolonged medical intervention, with survivors at increased risk of lifelong disability and poor quality of life.

What this study adds
• Carers have strong views about what matters in relation to the healthcare provided to preterm and low birthweight infants, and these are remarkably consistent across different countries and healthcare settings.
• What matters to carers is 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 are met; logistical support is available; and positive relationships with staff.

How this study might affect research, practice or policy
• It is vital that international and local organisations working to ensure high-quality and equitable care for small and sick newborns worldwide understand what matters to families.
• Further research is needed on the views of fathers and other family members, and on families receiving community-based care especially in low and middle-income countries.
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INTRODUCTION
Infants born preterm and/or with low birth weight (less than 2500g (LBW)) are at high risk of mortality and morbidity. [1][2][3] Their survival has been substantially improved by recent advances in neonatal care. [4 5] However, they often require complex and prolonged medical intervention, with survivors at increased risk of lifelong disability and poor quality of life. [6 7] While risks can be reduced through interventions provided before or during pregnancy and after birth, [8] these births represent a major cause of poor health globally, [1] with the highest burden in low and middle-income countries. [9][10][11] As a result, there has recently been renewed focus on ensuring high-quality and equitable care for small and sick neonates worldwide. [11] Family-centred care, where family members work with healthcare professionals (HCPs) to play an active role in providing emotional, social, and developmental support to the vulnerable infant, has demonstrable benefits [12] but is not available in all settings. The impact of a preterm or LBW birth on families is also increasingly understood, with consequences for attachment and bonding and parental health and wellbeing immediately after birth and beyond. [13 14] An understanding of families' views and values is needed, to ensure that healthcare meets the needs of infants and carers and to identify improvements required to existing care. [15 16] The aim of this qualitative evidence synthesis (QES) was to systematically review literature that aimed to understand the perspectives of families about the care provided by health services for preterm or LBW infants in hospitals and in the community.

METHODS
The protocol for this QES was registered with PROSPERO on 6 July 2021 (CRD42021261934). The review is reported in accordance with PRISMA guidelines (see Supplementary Table 1 for PRISMA checklist) and the Enhancing Transparency in Reporting the synthesis of Qualitative research (ENTREQ) statement. [17] Eligibility criteria: Topic of interest We used the PEO (Population, Exposure, Outcomes) framework to set out the inclusion criteria for the QES (Table 1).

Population and their problems
Included populations were: -Mothers, fathers, parents, families, carers, or other family members with first-hand experience of healthcare for a preterm or low birth weight infant; -In all study settings (low, middle and high income); -In all healthcare settings (home, community, primary, secondary and tertiary care).

Exposure
Healthcare delivered from birth to 24 months of age for: -Infants born preterm (<37 weeks or subcategories); -Infants born with low birth weight (<2500g or sub-categories).

Outcomes or themes
Qualitative or mixed methods studies examining views or values, including: -What matters to, or is important to, or is valued by families; -What they find acceptable and not acceptable in the healthcare of their infant.
We aimed to synthesise the views of family members including mothers, fathers, parents, carers, grandparents, siblings, or other family members. The views of healthcare workers (paid or unpaid) were outside the remit of the review. Studies in all countries (low, middle, and high-income) and healthcare settings (home, community, primary, secondary and tertiary care) were eligible for inclusion. A preterm infant was defined as an infant born alive before 37 completed weeks of gestation, [18] with further sub-divisions possible into extremely preterm (less than 28 weeks), very preterm (28 to 31 weeks), and moderate to late preterm (32 to 36 weeks). Low birth weight was defined as weight at birth of less than 2500 g. [19] This could be further categorized into very low birth weight (<1500 g), and extremely low birth weight (<1000 g).
We excluded studies that only described families' experiences (for example, how long the infant was in hospital, where the parents stayed during the admission, and so on).
We did not exclude studies that explored parents' views in the context of asking about a specific intervention (for example, kangaroo mother care or continuous positive airway pressure). However, the information we extracted from those studies related to how the intervention contributed to parents' views of healthcare in general, rather than their views about the specific intervention.
In our protocol, we specified that data collected from birth until the infant was 24 months of age would be included. However, as we screened studies, we found several highquality studies that had collected information when the children were older. We therefore changed our criteria to include studies collecting data later in childhood, on the condition that the data collection was clearly referring to the care received before the infant was 24 All rights reserved. No reuse allowed without permission.
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The copyright holder for this preprint this version posted  https://doi.org/10.1101/2022.06. 22.22276770 doi: medRxiv preprint months of age. We used uncorrected chronological age at the time of the data collection where possible, but studies that used corrected age were eligible for inclusion if this was the only measure reported.

Eligibility criteria: Types of studies
Primary studies that used qualitative study designs such as ethnography, phenomenology, case studies, grounded theory studies and qualitative process evaluations were eligible for inclusion. We included studies that used both qualitative methods for data collection (for example, focus group discussions, individual interviews, observation, diaries, document analysis, open-ended survey questions) and qualitative methods for data analysis (for example, thematic analysis, framework analysis, grounded theory). We excluded studies that collected data using qualitative methods but did not analyse these data using qualitative analysis methods (for example, open-ended survey questions where the response data are analysed using descriptive statistics only). Mixed methods studies were eligible if it was possible to extract the data that were collected and analysed using qualitative methods.
To ensure that the data reflected the views of a contemporary cohort of parents, studies published in or after 2000 were eligible. We excluded studies that had only been published as conference abstracts and unpublished PhD or Masters theses. Studies had to be published in English (the language spoken by the review team) to ensure that themes were appropriately identified, understood, and represented.
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Reflexive note
We are a multi-disciplinary team including a neonatologist, epidemiologist with expertise in child health, qualitative methodologist, information specialist, medical students, and specialty registrars in Public Health and Paediatrics. None of the team had personal experience of being a parent of a preterm or low birthweight infant. We maintained a reflexive stance throughout the different review stages. Our varied backgrounds and seniority, and different levels of topic expertise helped us to remain mindful of our presuppositions, as we encouraged each other to consciously acknowledge our own professional assumptions and how these skewed our interpretation of our findings. The senior author kept a reflexive journal throughout the review process to document and reflect on progress and decisions made.
search strategy was adapted for the other databases, with searches in some (such as African Journals Online and LILACS) limited to key words as these databases do not include MeSH terms. No language restrictions were placed on the searches. Instead, we identified English language papers during the screening process.

Study screening
Searches from individual databases were downloaded into Endnote 20 and duplicates removed. Titles and abstracts were screened independently by two reviewers against our established eligibility criteria. Full-text versions were obtained for the papers potentially meeting the inclusion criteria and were screened independently by two reviewers. Disagreements were resolved through discussion and in consultation with others in the review group.

Data extraction
The data extraction form collected details on the methods of included studies (including the population studied, healthcare setting, inclusion and exclusion criteria, recruitment method, and data collection and analysis methods); the results (including the themes identified, and any relevant quantitative data); and the quality assessment items from the Critical Appraisal Skills Programme (CASP) checklist (see Web Appendix 2). The form was piloted using two different studies before data extraction began. Data from each paper were extracted by two reviewers. Multiple publications from the same study were linked and compared for completeness and contradictions.
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Quality assessment
We used the CASP checklist for qualitative studies to assess the quality of all eligible studies. [20] Each paper was classified as high, moderate, or low quality, based on a qualitative assessment of all elements of the checklist. Two reviewers completed the assessment independently for each paper. A third reviewer evaluated all discrepancies, and these were resolved in consultation with the review group.

Study sampling
Qualitative evidence synthesis aims to identify variation in concepts rather than an exhaustive sample of papers. When large numbers of eligible studies are identified, the Cochrane Effective Practice and Organisation of Care (EPOC) Qualitative Evidence Syntheses guidance recommends sampling studies because too much data can impair analysis quality. [21] We limited our sample to 49 studies (51 papers) from the total eligible as this allowed for data saturation. The sampling criteria were pre-specified, to: include studies from different countries with varying resources; prioritise the inclusion of studies that scored three or higher on a data richness scale (see Web Appendix 3) [21]; and select studies identified as good or average quality according to the CASP classification.

Synthesis methods
Thematic synthesis was used, [22] drawing on concepts used for thematic analysis in qualitative research in primary studies to identify and develop themes across the included studies. Included papers were imported into NVivo12, [23] and information from all sections was used in the data coding. Data were coded inductively using a line-by-line method according to meaning and content (descriptive coding). Codes could be structured in tree All rights reserved. No reuse allowed without permission.
(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. form or in free form without hierarchical structure. New codes were created as necessary as we progressed through the papers and similar, or related, codes were grouped. Finally, coded data were synthesised into analytical themes which brought together groupings of the descriptive themes. The initial analysis was conducted by the senior author, and revised in discussion with the author group.

Certainty assessment
We used the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach to assess our confidence in each finding. [24] The GRADE-CERQual assessment is based on four components: 1) methodological limitations of included studies; 2) coherence of the review finding; 3) adequacy of the data contributing to a review finding; and 4) relevance of the included studies to the review finding. [25][26][27][28] The author group discussed and made a judgement (based on a consensus view) about the overall confidence in the evidence supporting each finding (high, moderate, low, or very low). All findings started as high confidence and were downgraded if there were concerns regarding any of the GRADE-CERQual components.

Included studies
7302 studies were identified by database screening once duplicates were removed (see Figure 1). 6550 studies were excluded by title and abstract screening. 750 full text papers were assessed for eligibility (2 reports could not be retrieved). Of these, 203 studies (reported in 208 papers) were eligible for inclusion. We selected 49 studies, reported in 51 All rights reserved. No reuse allowed without permission.
(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. papers, from 25 countries for inclusion in the analysis using the pre-specified criteria.  The studies that were eligible but not included are listed in Web Appendices 4 and 5. 34 studies focused on in-hospital care in a neonatal unit, although the level of care provided at these units varied by setting. Four studies examined views of community care, and eleven studies collected data on more than one setting or aspect of care (including transition from hospital to community care, or transfers between hospitals). The selected studies scored highly on data richness (38 scored four or five) and quality (46 assessed as "good"). All three studies assessed as being of "average" quality scored four for data richness.

Study and participant characteristics
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(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.   infants. Specified birthweight limits, observed birthweight ranges, the ages of the infants/children at the time of the study, and characteristics of the carers were not consistently reported. Four of the included studies collected some of their data when the children were older than 24 months, with the oldest children being 6 years old.
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The copyright holder for this preprint this version posted June 22, 2022. ; Included: Parents whose infants were born at <32 weeks (also birth <6 months previously in Sawyer); had been on neonatal unit for 2+ weeks; spoke English well; at least one member of the couple wanted to participate or they were single; included parents of babies who had died 39 (

Analysis findings
We identified 31 descriptive themes, 21 of which we graded with high confidence, and nine with moderate confidence. Only one theme was graded with low confidence. We grouped these descriptive themes into eight overarching analytical themes. All rights reserved. No reuse allowed without permission.
(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.  Matching needs with information. Carers want their informational needs and expectations to be met, and to feel confident in obtaining that information (e.g. by being comfortable or enabled to ask question). They also want to supplement this information via other sources (e.g. leaflets, books and the internet). High confidence "And they said, 'you don't need to concern yourself with that, we need to concern ourselves with that'. We now discuss each of the eight analytical themes in more detail. They are listed in alphabetical order to avoid undue emphasis being placed on one over another because of the team's biases and prior beliefs. families also hoped for good clinical outcomes such as weight gain. They also discussed their hopes for the child coming home and being a member of the family or community. Hopes for their child beyond childhood were rarely mentioned. Instead, parents focussed on short term outcomes, perhaps reflecting their need to stay focussed on the present.

Active involvement in care
This analytical theme included four descriptive themes. The first related to how carers wanted to be taught, be involved in, and have confidence in their ability to deliver essential care (such as nappy changes, pain management, supporting nutrition) to their vulnerable infant. In addition, carers wanted to be supported to be involved in activities other than essential care which encourage opportunities for parenting, including bonding (for example, touching and cuddling), and social family activities (for example, singing or reading). Parents discussed the importance of kangaroo mother care, or skin to skin care, as All rights reserved. No reuse allowed without permission.
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The copyright holder for this preprint this version posted  both an opportunity to deliver care and as an opportunity for parenting. These themes were ubiquitous across all settings (with high confidence).
We had moderate confidence in the other descriptive themes in this group. Fathers wanted to be directly involved in the routine care of their infant, and to be supported to do this. However, they sometimes felt that they were not encouraged and not as welcome in the neonatal unit. It was not clear whether fathers had been asked for their views, or were willing and able to express these, in different locations and across different cultural groups.
Carers also wanted support and processes to help them engage and take an active part in deciding what, and when, investigations, treatments, interventions and discharge occurs, although findings varied between settings with different cultural expectations and legal responsibilities.

Coping at home
Carers wanted to be able to access support and advice urgently should they need it once the infant was discharged. Sometimes carers felt torn between the desire for freedom from continual observation and input from HCPs, and the pressure resulting from this autonomy as they became the primary carer for their child. Because of this conflict, and because this was not discussed in any low or middle-income country study, we had moderate confidence in this finding. The importance of wider family and community support (for practical arrangements and advice) was clear. Expertise from HCPs in the community was also valued, although professional support in the community was described as inconsistent.
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(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. Carers also wanted to be prepared for their infant's discharge home. This included being taught how to look after their infant and gradually developing their experience in delivering practical care. Carers also discussed the value of preparation for discharge in emotional terms, such as the need to build their confidence after a long stay in a medical environment. Although fewer studies contributed to these descriptive themes, with less variability in geography and resources than with previous themes, we had high confidence in these findings due to high consistency between studies.
Lastly, many parents valued transition arrangements which they felt helped facilitate the safe transfer of care. This included the delivery of information, planned care pathways, and home visits, to ensure continuity of care. We had moderate confidence in this finding because the complexity and duration of transitional arrangements varied greatly between settings, and there were no studies from low or middle-income countries that contributed to this finding.

Emotional support for families
In addition to practical support, emotional support from family members, particularly grandparents and siblings, was highly valued by parents and seen as essential both whilst the infant was in hospital and after discharge. Carers also wanted emotional support from HCPs, including reassurance and encouragement. Specialist counsellors were valued for their ability to provide emotional support, particularly when parents were faced with bereavement or a poor prognosis. Carers also valued support from other parents of preterm or sick infants who were considered helpful in providing information about the All rights reserved. No reuse allowed without permission.
(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. Fathers also valued emotional support, but often felt that they had to be emotionally strong to support the infant's mother. We had moderate confidence in this finding, because there were only a few studies (especially from low and middle-income countries) that had explored the emotional support needs of fathers.

Healthcare environment
Parents expressed strong views about the environments in which their infants were cared for, especially neonatal units. Carers wanted easy access to their infants. This included mechanisms or initiatives to help them to visit and interact with their infant and, where possible, the co-location of twins. Carers wanted to learn about the complex and sometimes frightening setting (in terms of noises, leads/equipment, and processes) in which they needed to live and care for their infant. They valued the ability to tour the NICU before the birth (where practical, for example, if a preterm or LBW birth was suspected in pregnancy).
Carers were also concerned about real, or perceived, issues with staffing levels, equipment availability, and capability of the healthcare system to meet the needs of their infant.
Carers wanted privacy for breastfeeding or everyday family activities or interactions (for example, reading stories) in neonatal units. However, they also understood the need for medical observation, and therefore struggled with the conflict between their desire for seclusion and for close monitoring by staff. This was the descriptive theme for which we All rights reserved. No reuse allowed without permission.
(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. identified the most conflicting views, and it was not mentioned in any studies from low or middle-income countries. We therefore have low confidence in this finding.

Information needs met
Carers described wanting a great deal of information relating to the infant's condition, prognosis, investigations and procedures performed, as well as routine information about the infant's daily events. However, they also felt overloaded. There was a tension between wanting to be told about all possible eventualities, and only wanting to know what they needed to know at any particular point in time. Due to this conflict, we had moderate confidence in this finding. Carers also wanted frequent and regular updates from the clinical team (rather than just meetings when sentinel events occur) and open channels of communication. We had moderate confidence in this finding due to a lack of evidence from low and middle-income countries.
Carers wanted HCPs to have good communication skills and to use a variety of information-giving methods. This related to a need for immediacy, an appropriate pace and timing of information-giving, and the opportunity for follow-up discussions. However, what constitutes good communication may vary by parent, culture, and situation. Although we had minor concerns that there was variability in describing what constituted good communication skills in different settings, we graded this finding with high confidence because all carers agreed that they wanted clear and appropriate communication from HCPs. Carers also wanted to feel confident in obtaining information from multiple sources including from HCPs (for example, by being comfortable or enabled to ask questions) and All rights reserved. No reuse allowed without permission.
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Logistical support
Carers wanted a range of practical and logistical support during the first two years of their infant's life. Perhaps most immediately, they needed practical support to travel to see their infant, and support to sleep and live near them during their inpatient stay. In addition, they wanted support for the wider family (for example, crèche facilities for siblings) to allow them to engage in their 'normal' parenting and caring roles, before, and after, discharge. In all settings, carers wanted additional support and recognition of the direct (for example, medical costs) and indirect (for example, travel or lost earnings) financial burdens, both while the infant was an inpatient and afterwards. Finally, parents wanted formal, protected leave to allow them to visit the infant whilst in hospital, and to support them to provide care for a prolonged period after birth. Given the large variation in employment practices and laws across settings, this finding was graded with moderate confidence.

Positive relationships with staff
Carers wanted to develop caring and sensitive relationships with the HCPs caring for their infant. They also wanted consistency in care and communication, so that they could better understand rules, advice, therapeutic plans and predictions of outcome, from and between, different HCPs. We have moderate confidence in this finding, as this was not discussed in studies from low and middle-income countries. Carers wanted HCPs to be welltrained, competent, and able to provide the specialist care needed by the infant. However, carers also desired the development of respectful, collaborative relationships with the HCP, All rights reserved. No reuse allowed without permission.
(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. where the parent was identified as an important part of the care-team with unique skills and knowledge of the infant, and that they were therefore heard and understood.

Main Findings
This systematic qualitative evidence synthesis of a contemporary evidence-base identified eight analytic themes and 31 descriptive themes. Nearly all of our descriptive themes were graded with high or moderate confidence. Families of preterm and LBW infants experience an extremely difficult time in the post-natal period. Whilst the ultimate desire for the majority of parents is a good outcome for their child, we found many other issues of importance to families related to processes within the health care environment.
Unwelcoming hospital environments, poor logistical support, poor emotional support, noncollaborative relationships with staff, and lack of information all resulted in a limited ability for parents to engage in activities that matter most to them: to be actively involved in delivering care to, and parenting, their infant. The data also indicated that the attitudes and behaviours of HCPs are very important to families. This includes good communication and social skills and clinical competence as well as consistency between practitioners.
Previous research in this field has highlighted the state of liminality that parents of infants in NICU find themselves in, where parents feel like life is on hold, feel alienated, and struggle with their identity, sometimes not feeling like a real parent. [80 81] This can often lead parents to engaging in a deferential attitude towards the HCP 'experts' as they do not wish to destabilise the status quo for fear of damaging relationships. The results of this qualitative evidence synthesis enhance this picture, revealing that parents want support to All rights reserved. No reuse allowed without permission.
(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. be able to attend to the care of their infants and require positive relationships with staff from whom they feel fully informed about their infant's progress.

Strengths and weaknesses
We identified more than 200 studies where the views of carers of preterm, or LBW, infants had been investigated, across a range of healthcare and resource settings. Our sampling strategy allowed us to select 49 of these studies that represented a good geographical coverage, whilst retaining the studies with the highest methodological quality and with data that were rich and relevant to the research question.
Agreement in the views of parents appeared coherent across most of the evidence reviewed, but much of the work was performed when the infant was still receiving neonatal care, or about to be transferred to a community setting; little evidence of what mattered to carers in community-based care settings or in later years was identified. In addition, where there was less certainty in what was important to parents (including the ability to be involved in decisions about their infant's care and the need for privacy), our lower confidence in these descriptive themes reflects the variation in how parents discussed these aspects of care, rather than the fact that the issues were not discussed at all.
Although we aimed to focus on what matters to families in the care of their preterm or LBW infant, we acknowledge that families' views were sometimes influenced by their perception of the quality of the care that they had experienced. In addition, although we ensured our search included databases in which studies conducted in low resource countries might be listed (LILACS, African Journals Online) we elected to focus on papers All rights reserved. No reuse allowed without permission.
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The copyright holder for this preprint this version posted June 22, 2022. ; https://doi.org/10.1101/2022.06.22.22276770 doi: medRxiv preprint published in English because this was the language of the study team. We did not translate studies from other languages because we were concerned about a loss of meaning and inaccuracies in our representation of the views of parents. However, we do acknowledge that this is a limitation, because papers published in other languages may have described what matters to parents differently.

Implications for Research, Policy and Practice
Enabling a positive post-natal period for families of preterm and LBW infants is challenging. The focus of HCPs and the healthcare system is naturally on the medical needs and well-being of the infant and the parents' practical and emotional needs are secondary to this. However, this review identifies a number of approaches that health care services and professionals can implement to improve the experience of parents. Many of these are consistent with the Family Centred Care model of healthcare which acknowledges the role of family members in supporting the well-being of the hospitalised infant, recognising the mutually beneficial partnerships among HCPs, parents and families. [12] In this work, we have attempted to sample from a broad range of countries with varying resources, and from different healthcare settings. Given this, it is perhaps surprising how coherent the wishes of carers were across studies. However, practical barriers to implementation of care do affect families in different ways, and support needs to be bespoke between, and even within, different communities. Local services are therefore likely to be best placed to identify what support (for example, financial or logistic) might be most needed in working towards better support for families in this vulnerable period. One example of this may be the involvement of fathers in neonatal care, which is influenced by All rights reserved. No reuse allowed without permission.
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The copyright holder for this preprint this version posted June 22, 2022. ; https://doi.org/10.1101/2022.06.22.22276770 doi: medRxiv preprint different cultural, social and legal barriers across different communities. Our conclusions in relation to fathers are graded with moderate, rather than high, confidence and further research is needed in low and middle-income countries to understand how best to involve and support fathers in those settings. We also found limited evidence on the views of extended family members. However, we hope that these data provide a framework for making decision that allows for the consideration of the views and needs of the wider family, especially as they were identified as important sources of support by parents.
Where we graded our findings with moderate or low confidence, this was often because the issues had not been reported in studies from low and middle-income countries.
Preterm and LBW infants require high-quality inpatient care in dedicated facilities staffed by specialized HCPs, and this provision is known to be inadequate in many settings. [82] In the absence of appropriate infrastructure and expertise, it is not surprising that families are not able to participate in shared decision-making or express expectations about consistency of care, communication, and their need for privacy. Our data therefore supports calls to "strengthen and invest" in care for these infants, "improve the quality of maternal and newborn care" and "harness the power of parents, families and communities" in these settings. [11] CONCLUSION We found high consistency in what matters to families, even though parents and family members reported a variety of experiences in the care of preterm or LBW infants.
Local solutions may be best placed to address the needs of families. Most studies to date have been based in, or around, neonatal units. Further research is needed on what matters All rights reserved. No reuse allowed without permission.
(which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. to parents who require community-based care at birth or after discharge and on the views and needs of fathers and extended family members, especially in low and middle-income countries.
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CONTRIBUTORSHIP STATEMENT
LH, DO and FW conceived and designed the study. MM designed the search strategy (in consultation with other review authors) and performed the database searches. LH, DO, HB, ED, TI and AA screened, selected and reviewed eligible reports. LH, DO, HB, ED and FW extracted data. LH, DO and FW completed the first draft of the paper. All authors commented on and revised the paper, and approved the final version. LH is the guarantor for the paper, and accepts full responsibility for the finished work and/or the conduct of the study, had access to the data, and controlled the decision to publish.

ACKNOWLEDGMENTS
We are grateful to Clive Gregory, Research Manager, for his support during the set-up of this project, and to Delyth Morris, Cardiff University Subject Librarian, and other Cardiff University library staff for their support in accessing the publications included in this review.

COMPETING INTERESTS
The authors have no conflicts of interest to declare. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

ETHICAL APPROVAL
Ethical approval was not required for this qualitative evidence synthesis because no primary data were collected.

DATA AVAILABILITY
No primary data were collected for this qualitative evidence synthesis. All data used are available in the original articles, manuscript, supporting information, and appendices.
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