NICU-to-home transition: a mixed method systematic review

1. NICU-to-home transition: a mixed method systematic review Rita Pace Parascandalo

2. Introduction • Reviewing the literature is the starting point for most research studies. • Since the 1990s the systematic review (SR) has been developed. • The main purpose of a SR is to inform practice and policy and identify gaps in the knowledge.

3. SR initially focused on quantitative studies, specifically RCTs, and included meta-analysis of data. • Qualitative research could also be reviewed and synthesised, with the aim of providing greater understanding of a phenomenon. • SR have developed in response to a growing need for policy makers, researchers and practitioners to have access to the latest research evidence when making decisions.

4. More recent advances have led to mixing methods at the review level • Integrating the findings of multiple, already existing studies that are labelled broadly as using either ‘qualitative’ or ‘quantitative’ methods. • SR adopt rigorous methods.

5. Traditionally, SR have been used most often to answer questions of effectiveness – ‘What works?’ • Reviews that go beyond such questions are newer, and often bring together data from both ‘qualitative’ and ‘quantitative’ studies. • Methods for reviewing both qualitative and quantitative studies in a systematic way are still emerging.

6. The review question ‘What are the perspectives of neonatal staff and parents about the transition of preterm infants from the NICU to home?’

7. Inclusion criteria • Studies designed to focus around NICU discharge preparation and /or transition to home of the preterm infant. • Studies where data has been collected on approaching discharge towards the end of the NICU hospitalisation and /or in the first six months after discharge. • Studies where the infants were discharged home without the requirement of any special care (e.g. apnoea monitors, oxygen therapy, etc)

8. Studies where the parents are the primary caregivers at home. • Studies where NICU discharge was according to standard procedures. • Studies done in any country, published in any language, using any research design and published from 1990 till present. • Full-text studies are published and accessible.

9. Exclusion criteria • Studies which are restricted to focus on particular aspects relating to preterm birth e.g. psychological distress. • Abstracts from conferences, books and unpublished dissertations. • Studies published prior to January 1990. • Studies which focus only on the NICU hospitalisation period. • Studies focusing on specialised discharge procedures as in earlier NICU discharge.

10. Literature search • An extensive literature search in numerous relevant databases was done. • Ovid Medline, PsycINFO, CINAHL, Cochrane Databases of Systematic Reviews, Academic Search Complete, BMJ Journals, EBSCOhost, BIOMED Collection, JSTOR, Sage Journals Online, Joanna Briggs Institute and Google Scholar. • Studies were also hand-searched.

11. The search for the literature was done between January and August 2011. • Keywords used included a combination of ‘discharge’ , ‘NICU’, ‘neonatal intensive care’, ‘parent’, ‘staff’, ‘transition’, ‘preterm’. • Synonyms and alternative words / terms to these identified keywords have also been searched.

12. Using the identified key words and their synonyms or alternative words, two separate literature searches were done; one for neonatal staff and another for the parents. • For each search key words were attributed to four main areas: population, topic, orientation and context. • Boolean searches were then carried out to combine keywords to be searched for each of the four main areas.

13. E.g. Literature search for neonatal staff

14. Search results • 165 potentially relevant search results • 28 were empirical studies which clearly or loosely met the inclusion criteria. • Qualitative studies, n=8, included • Quantitative studies, n= 9, included • Ambiguous studies, n=11, 10 excluded, 1 awaiting english translation

15. Reasons for exclusion • Focus mainly on stress • Unclear when exactly data was collected • Main focus was on the hospitalisation period • Aim of study not reflected in the findings.

16. Included studies according to research designs & country • Qualitative studies: Qualitative descriptive 5 (US, UK, Korea, Brazil{2}) Phenomenology 3 (Sweden, Canada, USA) • Quantitative studies: Descriptive Survey 9 (Scotland, England, USA {3}, Canada {2}, Israel {2})

17. Quality assessment for qualitative studies • Quality assessment for qualitative studies utilising the tool developed by Downe et al (2007) • For each study, questions are answered using Y=yes, N=no or UC=unclear • Each study is graded using the following grading system: A: No, or few flaws; quality is high B: Some flaws unlikely to affect quality C: Some flaws that may affect quality D: Significant flaws that very likely affect quality

18. Tool used for quality assessment of qualitative studies

19. Critical comments for the qualitative studies • Overall qualitative studies were of average to low quality (2 B, 3C, 3D) • A theoretical perspective and reflexivity were not evident in any of the studies. • Research design not justified. • Details for recruitment were lacking. • Limited aspects of rigour discussed. • Lack in other important details; inclusion criteria and sampling, characteristics of the sample, context of the study.

20. Quality assessment for quantitative studies • Utilised a self-designed tool for appraisal of survey studies. • For each study, questions are answered using Y=yes, N=no or UC=unclear • Each study is graded using the following grading system: A: no, or few flaws, quality is high B: some flaws, unlikely to affect quality C:some flaws, that may affect quality D:significant flaws, likely to affect quality

21. Tool used for quality assessment of quantitative studies

22. Critical comments for the quantitative studies • Overall quantitative studies were of average to low quality (4 B, 4 C, 1D) • Majority were small scale studies with non random convenience sampling • Design not justified • Recruitment and sampling not clear • Limited discussion on issues of validity and reliability

23. Characteristics of qualitative studies • Study participants: Mothers only Parents – but results reflect maternal responses Parents – collectively, no distinction between maternal and paternal responses Parents – responses are distinguised between mothers and fathers • Sample sizes: 6 – 47 mothers and 7 – 10 sets of parents

24. Characteristics of qualitative studies (cont) • Sampling methods: Mainly purposive In some studies sampling is not clear • Data collection: • Methods – semi-structured to unstructured interviews and focus groups • Timing – Range between one time data collection to longitudinal collection up to five times Starting from prior discharge, at time of discharge and up to 6 months after discharge

25. Characteristics of qualitative studies (cont) • Data analysis: Content analysis (Miles & Huberman, 1994) Thematic content analysis (Bardin, 2000) Colaizzi’s (1978) method Giorgi’s (1985, 2000) method

26. Characteristics of quantitative studies • Study participants: Mothers only Neonatal nurses and mothers Parents – but results reflect maternal responses Parents – collectively, no distinction between maternal and paternal responses Parents – results distinguished between mothers and fathers

27. Characteristics of quantitative studies (cont) • Sample sizes: 7 – 34 nurses 45 – 56 mothers 10 -80 sets of parents 867 family-nurse pairs • Sampling methods: Non-random convenience Unclear

28. Characteristics of qunatitative studies (cont) • Data collection: • Methods – self-administered / face-to-face/telephone questionnaires - Self-designed / standard tools • Timing – from one day before discharge to three months post discharge • Data anlaysis: Descriptive and /or inferential statistics

29. Data extraction and analysis • Findings that contributed to answering the review question were extracted from the studies. • Studies included in this review can be termed ‘descriptive studies’ where perpectives or experiences of participants are elicited from both the quantitative and qualitative paradigms.

30. These kind of studies are also called ‘views’ studies. • A descriptive thematic analysis was done separately for the qualitative and quantitative studies. • The descriptive themes and their essential features were examined in the light of the review question to infer the perspectives of neonatal staff and parents.

31. Themes and sub-themes for qualitative studies

33. Main themes and subthemes for quantitative studies

35. Next step: integrating findings from both qualitative and quantitative studies • ?????? • Possibly a comparative synthesis guided by the following questions: • What are perspectives focused on in the quantitative and qualitative studies? • Which perspectives are similar / different across both types of studies? • What areas have not been addressed in such studies so far?