When an infant or a child is hospitalized in an intensive care unit (ICU), there is widespread impact on the family.1 Family can refer to those biologically related to the child or those who are not but who have a significant relationship with and provide support to the child.2 This relationship is defined by the patient or, in the case for children, their surrogates.2 The psychosocial health of the family members can be negatively impacted during an intensive care hospitalization.1 Post intensive care syndrome can also impact patients leading to mental health, cognitive and physical impairments.1 It has been well described in the literature in relation to adult patients, however, its impact on pediatric patients and their families is poorly described.1 Nevertheless, up to 60% of children survivors of ICUs experience psychological trauma3 and 21% to 32% of family members experience acute stress or post-traumatic stress disorder.4 Other studies have focused on the patient experience,5 however, the impact on the family should not be ignored. Family-centered care (FCC) concepts have been developing for decades and there has been increasing focus on initiatives to improve the involvement of families in health care and hospitalization.2 However, the magnitude of involvement depends on how families are empowered to engage in decision-making and care in general. When families are empowered, they are considered true partners of the health care team in the care of the child. Partnership between families and the health care team is defined as the strategies that result in the achievement of FCC and involves active participation in the patient's care and decision-making.6 The emergence of the concepts of partnership promotes mutually beneficial involvement of patients, families and the health care team in the development, implementation and evaluation of health care.6 It is suggested that this partnership is required in order to achieve optimal health, care and economic outcomes.6
Interventions to improve partnerships between families and health care teams have been implemented, aiming to minimize the detrimental psychosocial outcomes from intensive care hospitalization.7,8 Due to the considerable impact of ICU stays, various studies have explored interventions to support families. Existing literature includes interventions focused on family integrated care8 empowerment7 and mother-nurse partnerships.9 Reviews of adult patients and their families have reported the effectiveness of interventions that have included diaries,10,11 family support nurses, information brochures, flexible visiting hours, structured communication and improved comfort measures,10 and family presence at important events.11 It has been suggested that there is a need to further examine the benefits of partnerships between families and health professionals.2
The development of partnerships within an ICU environment is highly valued by parents, which recognizes the importance of the family relationship in the patient's care.12 An understanding of the challenges, benefits and acceptability of interventions as experienced by families is necessary to inform health providers in their decision-making concerning optimal interventions for implementation.
A preliminary search of PROSPERO, PubMed, the Cochrane Database of Systematic Reviews and the JBI Database of Systematic Reviews and Implementation Reports was conducted to identify potentially similar previous reviews. One qualitative review focused only on the neonatal ICU and included parent and nurse experiences of partnership.13 Another review focused on pediatric chronic illness, revealing that problem-solving therapy may improve parent mental health.14 A further systematic review examined infant and parent outcomes from family-centered care interventions in neonatal ICUs, with a majority of studies assessing parent satisfaction and education, with some interventions assessing anxiety, stress or depression.15 Two review protocols focusing on psychological interventions in the neonatal ICU16 and family engagement within adult, pediatric and neonatal ICUs were located.17 To the best of the authors’ knowledge, no previous or in-progress reviews focused on the effectiveness and experiences of family partnership interventions were identified. This review will focus on both the effectiveness and experiences of interventions promoting partnership between families and both neonatal and pediatric ICUs incorporating both quantitative and qualitative studies.
- i) What is the effectiveness of interventions where the health care team collaborates with families as partners in pediatric and neonatal ICUs?
- ii) What are families’ experiences of interventions where the health care team collaborates with families as partners in pediatric and neonatal ICUs, including benefits and challenges?
The review will consider studies conducted in the pediatric or neonatal ICU that include families of patients, regardless of the patient's length of stay, diagnosis or treatment outcome. In view of the diversity of contemporary family types across cultures, for this review, family is defined as the patient's surrogates. The family may be biologically related or unrelated to the patient. In the pediatric and neonatal ICU context, the family is often the parents and individuals who provide support and with whom the patient has a significant relationship.2
The quantitative component of the review will consider studies with interventions where the multidisciplinary team partners with families in health care. The multidisciplinary team will encompass members of the health care team providing care to the patient and family, including medical practitioners, nurses, allied health professionals such as social workers, child life specialists, psychologists, and support staff such as chaplains. It will exclude volunteers, other parents and student health professionals. It will incorporate family interventions fostering collaboration,18 empowerment,19 active participation, information sharing, choice, respect or dignity.20 Interventions must occur during intensive care hospitalization but may extend before or after this period. The interventions will be compared with all existing alternative interventions.
Phenomena of interest
The qualitative component of this review will consider studies exploring family experiences of interventions that are conducted in collaboration and partnership with families. This may include the benefits and challenges of these interventions as well as the acceptability or other aspects of the intervention.
The quantitative component of this review will consider studies that include psychosocial or satisfaction outcome measures, such as (but not limited to) stress, anxiety, depression,2 quality of life,21 family functioning, family empowerment19 or satisfaction with FCC. These outcomes should be measured by a validated instrument. Outcomes will focus on the family, but patients’ outcomes will also be reported, when available.
The qualitative component of this review will consider studies associated with hospitalization in pediatric or neonatal ICUs. An ICU is defined as “an organized system for the provision of care to critically ill patients that provides intensive and specialized medical and nursing care, an enhanced capacity for monitoring, and multiple modalities of physiologic organ support to sustain life during a period of acute organ system insufficiency.”22(p.274) This may take the form of separate or combined pediatric ICUs and neonatal ICUs that are located in any type of hospital. It will include studies conducted in any country.
Types of studies
This review will consider quantitative, qualitative and mixed methods studies. Quantitative studies will include both experimental and quasi-experimental study designs including randomized controlled trials, non-randomized controlled trials, before and after studies and interrupted time-series studies. Qualitative studies will include designs such as phenomenology, grounded theory, ethnography, action research and feminist research. Mixed method studies will only be considered if data from the quantitative or qualitative components can be clearly extracted.
Studies published in English or French will be included. Studies published from 2000 to the present will be included to represent current practices and because of changes in FCC, such as increased visiting times, that occurred around this time.13
The proposed systematic review will be conducted in accordance with the JBI methodology for convergent segregated mixed methods systematic reviews.23
The search strategy will aim to locate both published and unpublished studies. An initial limited search of PubMed and CINAHL was undertaken to identify articles on the topic. The text words contained in the titles and abstracts of relevant articles, and the index terms used to describe the articles were used to develop a full search strategy for MEDLINE (Ovid) (see Appendix I). The search strategy, including all identified keywords and index terms, will be adapted for each included information source. The reference list of all studies selected for critical appraisal will be screened for additional studies.
The databases to be searched include: MEDLINE (Ovid), CINAHL (EBSCOhost), Embase (Elsevier), PsycINFO (Ovid) and Web of Science Core Collection (Clarivate).
Sources of unpublished studies and gray literature to be searched include: ProQuest Dissertations and Theses and DART Europe E-theses Portal. For quantitative studies only, ClinicalTrials.gov and WHO International Clinical Trials Registry Platform will also be searched via the Cochrane Library (Cochrane).
Following the search, all identified citations will be collated and uploaded into EndNote vX9 (Clarivate Analytics, PA, USA) and duplicates removed. Titles and abstracts will then be screened by two independent reviewers for assessment against the inclusion criteria for the review using Rayyan (Qatar Computing Research Institute, Doha, Qatar). Potentially relevant studies will be retrieved in full and their citation details imported into the JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; JBI, Adelaide, Australia).24 The full text of selected citations will be assessed in detail against the inclusion criteria by two independent reviewers. Reasons for exclusion of full text studies that do not meet the inclusion criteria will be recorded and reported in the systematic review. Any disagreements that arise between the reviewers at each stage of the study selection process will be resolved through discussion, or with a third reviewer. The results of the search will be reported in full in the final systematic review and presented in a Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) flow diagram.25
Assessment of methodological quality
Quantitative studies (and quantitative components of mixed methods studies) selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using the standardized critical appraisal instrument from JBI SUMARI.
Qualitative studies (and qualitative components of mixed methods studies) selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using the standardized critical appraisal instrument from JBI SUMARI.
Authors of papers will be contacted to request missing or additional data for clarification, where required. Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer. The results of the critical appraisal will be reported in narrative form and in a table.
All studies, regardless of the results of their methodological quality, will undergo data extraction and synthesis, where possible. Results of the assessment of methodological quality will be reported and taken into consideration when discussing the final integrated findings.
For the quantitative component, data will be extracted from quantitative and mixed methods studies (quantitative component only) included in the review by two independent reviewers using the standardized data extraction tool in JBI SUMARI. The data extracted will include specific details about the populations, study methods, interventions and outcomes of significance to the review objective.
For the qualitative component, data will be extracted from qualitative and mixed methods studies (qualitative component only) included in the review by two independent reviewers using the standardized JBI data extraction tool in JBI SUMARI. The data extracted will include specific details about the population, context, culture, geographical location, study methods and phenomena of interest relevant to the review objective. Findings and their illustrations will be extracted and assigned a level of credibility.
Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer. Authors of papers will be contacted to request missing or additional data, where required.
Data synthesis and integration
This review will follow a convergent segregated approach according to the JBI methodology for mixed methods systematic reviews using JBI SUMARI. This will involve separate quantitative and qualitative synthesis followed by integration of the resultant quantitative evidence and qualitative evidence.
Data will, where possible, be pooled with statistical meta-analysis using JBI SUMARI. Effect sizes will be expressed as either odds ratios (for dichotomous data) or weighted (or standardized) final post-intervention mean differences (for continuous data) and their 95% confidence intervals will be calculated for analysis. Heterogeneity will be assessed statistically using the standard chi squared and I2 tests. Statistical analyses will be performed using random or fixed effects depending on whether heterogeneity is observed or not.26 Subgroup (e.g. neonatal versus pediatric findings, individual outcomes) and sensitivity analyses will be conducted to explore potential causes of heterogeneity. Where statistical pooling is not possible, the findings will be presented in narrative form including tables and figures to aid in data presentation, where appropriate. A funnel plot will be generated using Stata IC 15 to assess publication bias if there are 10 or more studies included in a meta-analysis. Statistical tests for funnel plot asymmetry (Egger test, Begg test, Harbord test) will be performed, where appropriate.
Qualitative research findings will, where possible, be pooled using the JBI SUMARI meta-aggregation approach.27 This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings and categorizing these findings based on similarity in meaning. These categories will then be subjected to a synthesis to produce a comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form.
Integration of quantitative evidence and qualitative evidence
The findings of each single method synthesis included in this review will then be configured according to the JBI methodology for mixed methods systematic reviews.23 This will involve quantitative evidence and qualitative evidence being juxtaposed and organized into a line of argument to produce an overall configured analysis. Where configuration is not possible, the findings will be presented in narrative form. The integrated analysis will be used to develop recommendations for research and clinical practice.
Cécile Jaques from the Medical Library, Research and Education Department, Lausanne University Hospital and Bureau d’Echange des Savoirs pour des praTiques exemplaires de soins (BEST): a JBI Centre of Excellence provided advice and assistance with the development of the search strategy. This review forms a component of the requirements for the completion of a Doctor of Philosophy for SB.
SB received a ThinkSwiss scholarship to travel to collaborate with review authors and is supported by an Australian Government Research Training Program Scholarship. The sponsors will have no influence on the content or findings of the review.
Appendix I: Search strategy
MEDLINE (Ovid) search strategy
(Exp Intensive Care Units, Pediatric/ OR Exp Intensive Care, neonatal/ OR (((Pediatric OR paediatric OR neonatal OR newborn or baby) ADJ5 (“intensive care” OR ICU)) OR PICU OR NICU OR PCICU).ab,ti,kf. OR (exp Intensive Care Units/ AND (“Adolescent”/ OR exp “Child”/ OR exp “Infant”/ OR Adolescent, Hospitalized/ OR Child, Hospitalized/ OR exp “Pediatrics”/ OR (prepube∗ OR preadolescen∗ OR adolescen∗ OR teenager∗ OR child∗ OR kid OR kids OR baby OR babies OR infant OR infants OR pediatric OR pediatrics OR newborn∗ OR neonat∗).ab,ti,kf.))) AND (exp Family/ed,th OR exp Family health/ed OR ((exp Family/ OR (father∗ OR mother∗ OR families OR family OR familial OR relatives OR parent OR parents OR parental OR parenthood OR stepparent∗ OR stepfamily OR stepfamilies OR kinship∗ OR Surrogate∗ OR sibling∗ OR Gestational Carrier∗ OR caregiver∗ OR carer∗ OR careprovider∗ OR caretaker∗ OR significant other∗ OR legal guardian∗).ab,ti,kf.) AND (Nursing process/ OR counseling/ OR exp “Psychotherapy”/ OR Self-Help Groups/ OR Peer Group/ OR Health Education/)) OR ((father∗ OR mother∗ OR families OR family OR familial OR relatives OR parent OR parents OR parental OR parenthood OR stepparent∗ OR stepfamily OR stepfamilies OR kinship∗ OR Surrogate∗ OR sibling∗ OR brother∗ OR sister∗ OR caregiver∗ OR carer∗ OR careprovider∗ OR caretaker∗ OR significant other∗ OR legal guardian∗) ADJ6 (Program∗ OR Workshop∗ OR involvement OR empowerment OR engagement OR communication OR participation OR partnership OR presence OR training OR collaboration OR Teach∗ OR Intervention∗ OR counsel∗ OR education∗)).ab,ti,kf.)
Search retrieved 2397 records on 16 July 2019
1. Manning JC, Pinto NP, Rennick JE, Colville G, Curley MAQ. conceptualizing post intensive care syndrome in children-The PICS-p Framework. Pediatr Crit Care Med
2018; 19 (4):298–300.
2. Davidson JE, Aslakson RA, Long AC, Puntillo KA, Kross EK, Hart J, et al. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med
2017; 45 (1):103–128.
3. Lopes-Junior LC, Rosa M, Lima RAG. Psychological and psychiatric outcomes following PICU admission: a systematic review
of cohort studies. Pediatr Crit Care Med
2018; 19 (1):e58–e67.
4. Balluffi A, Kassam-Adams N, Kazak A, Tucker M, Dominguez T, Helfaer M. Traumatic stress in parents of children admitted to the pediatric intensive care unit. Pediatr Crit Care Med
2004; 5 (6):547–553.
5. Herrup EA, Wieczorek B, Kudchadkar SR. Characteristics of postintensive care syndrome in survivors of pediatric critical illness: a systematic review
. World J Crit Care Med
2017; 6 (2):124–134.
6. Nickel WK, Weinberger SE, Guze PA. Patient partnership in healthcare committee of the American College of Physicians. Principles for patient and family partnership in care: an American College of Physicians Position Paper. Ann Intern Med
2018; 169 (11):796–799.
7. Melnyk BM, Alpert-Gillis L, Feinstein NF, Crean HF, Johnson J, Fairbanks E, et al. Creating opportunities for parent empowerment: program effects on the mental health/coping outcomes of critically ill young children and their mothers. Pediatrics
2004; 113 (6):e597–607.
8. O’Brien K, Robson K, Bracht M, Cruz M, Lui K, Alvaro R, et al. Effectiveness of family integrated care in neonatal intensive care units on infant and parent outcomes: a multicentre, multinational, cluster-randomised controlled trial. Lancet Child Adolesc Health
2018; 2 (4):245–254.
9. Uhm JY, Kim HS. Impact of the mother-nurse partnership programme on mother and infant outcomes in paediatric cardiac intensive care unit. Intensive Crit Care Nurs
10. Kynoch K, Chang A, Coyer F, McArdle A. The effectiveness of interventions to meet family needs of critically ill patients in an adult intensive care unit: a systematic review
update. JBI Database System Rev Implement Rep
2016; 14 (3):181–234.
11. Mitchell ML, Coyer F, Kean S, Stone R, Murfield J, Dwan T. Patient, family-centred care interventions within the adult ICU setting: an integrative review. Aust Crit Care
2016; 29 (4):179–193.
12. Reis MD, Rempel GR, Scott SD, Brady-Fryer BA, Van Aerde J. Developing nurse/parent relationships in the NICU through negotiated partnership. J Obstet Gynecol Neonatal Nurs
2010; 39 (6):675–683.
13. Brødsgaard A, Pedersen JT, Larsen P, Weis J. Parents’ and nurses’ experiences of partnership in neonatal intensive care units: a qualitative review and meta-synthesis. J Clin Nurs
2019; 28 (17–18):3117–3139.
14. Law E, Fisher E, Eccleston C, Palermo TM. Psychological interventions for parents of children and adolescents with chronic illness. Cochrane Database Syst Rev
15. 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; 32 (1):63–75.
16. Childs G. Effectiveness of psychological interventions in parents of NICU infants PROSPERO 2017 CRD42017054677. 2017.
17. McAndrew N, Guttormson J, Jerofke T, Hetland B, Costa D, Harding E. A systematic review
of family engagement interventions in adult, pediatric and neonatal intensive care units PROSPERO 2018 CRD42018109259. 2018.
18. Franck LS, O’Brien K. The evolution of family-centered care: from supporting parent-delivered interventions to a model of family integrated care. Birth Defects Res
2019; 111 (15):1044–1059.
19. Ashcraft LE, Asato M, Houtrow AJ, Kavalieratos D, Miller E, Ray KN. Parent empowerment in pediatric healthcare settings: a systematic review
of observational studies. Patient Research
2019; 12 (2):199–212.
20. Johnson B, Abraham M, Conway J, Simmons L, Edgman-Levitan S, Sodomka P, et al. Partnering with patients and families to design a patient- and family-centered health care system: recommendations and promising practices. Institute for Family-Centered Care and Institute for Healthcare Improvement
21. Marcus KL, Henderson CM, Boss RD. chronic critical illness in infants and children: a speculative synthesis on adapting ICU care to meet the needs of long-stay patients. Pediatr Crit Care Med
2016; 17 (8):743–752.
22. Marshall JC, Bosco L, Adhikari NK, Connolly B, Diaz JV, Dorman T, et al. What is an intensive care unit? A report of the task force of the World Federation of Societies of Intensive and Critical Care Medicine. J Crit Care
23. Lizarondo L, Stern C, Carrier J, Godfrey C, Rieger K, Salmond S, et al.
Chapter 8: Mixed methods systematic reviews. In: Aromataris, E, Munn, Z, editors. Joanna Briggs Institute Reviewer's Manual [Internet]. Adelaide: JBI; 2017 [cited 10 May 2019]. Available from: https://reviewersmanual.joannabriggs.org/
24. Munn Z, Aromataris E, Tufanaru C, Stern C, Porritt K, Farrow J, et al. The development of software to support multiple systematic review
types: the Joanna Briggs Institute System for the Unified Management, Assessment and Review of Information (JBI SUMARI). Int J Evid Based Healthc
2019; 17 (1):36–43.
25. Moher D, Liberati A, Tetzlaff J, Altman DG. The PRISMA Group. Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med
2009; 6 (7):e1000097.
26. Tufanaru C, Munn Z, Stephenson M, Aromataris E. Fixed or random effects meta-analysis? Common methodological issues in systematic reviews of effectiveness
2015; 13 (3):196–207.
27. Lockwood C, Munn Z, Porritt K. Qualitative research synthesis: methodological guidance for systematic reviewers utilizing meta-aggregation. Int J Evid Based Healthc
2015; 13 (3):179–187.