Table 1.

Author, year, country	Approach/Aim	Sample Characteristics	Quality Score	Results
Mixed Methods Designs
Cameron et al. (2009), United States	Prospective, observational and survey-based design to evaluate the effect of parental presence on PICU rounds	Rounding was observed on 130 patients in a PICU. 52 parents participated in semi-structured interviews.	50%	Parents report increased satisfaction from participation and provide new information when on rounds. However, parental presence may limit discussion during rounds which may limit discussion during rounds which may adversely affect patient care.
Cantwell-Bartl & Tibballs (2013), Australia	Mixed methods design to evaluate the psychosocial status of mothers and fathers of infants with hypoplastic left heart syndrome (HLHS)	29 parents of alive children with HLHS. 16 mothers and 13 fathers.	75%	All parents of surviving children with HLHS exhibited clinical levels of traumatic stress, the PICU environment alienates parents from their infants and interferes with parent-infant bonding.
Levin et al. (2015), United States	Prospective, crosssectional approach to identify areas for improvement in family-centered rounds from both family and provider perspective	232 rounds observed. 61 mothers, 25 fathers, 6 others surveyed.	75%	Families and providers agreed that rounds keep the family informed. Families offered advice that providers could improve upon rounds by being more considerate and courteous.
McPherson et al. (2011), Canada	Mixed methods design to develop a detailed understanding of the physical, professional and interpersonal contexts of a PICU in order to develop a feasible, relevant and sustainable approach to parental inclusion on rounds	Survey: 32 parents of 32 children. Interview: 3 parents.	50%	Parents indicated a strong desire to participate in pediatric intensive care unit rounds.
October et al. (2014), United States	Mixed methods design to identify factors important to parents making decisions for their critically ill child. Good parent framework.	43 parents of 29 children for whom a family conference was being convened. 25 mothers	75%	Most common components of being a good parent described by parents included focusing on their child’s quality of life, advocating for their child with the medical team, and putting their child’s needs above their own.
Qualitative Designs
Abib El Halal et al. (2013), Brazil	Descriptive design to explore parents’ perspectives of the quality of the care offered to them and their terminally ill child in the child’s last days of life	15 parents of 9 children who had died in 2 PICUs.	75%	Quality of communication was low. Parental participation in decision-making was low. Families reported uncompassionate attitudes from medical staff.
Ames et al. (2011), Canada	Descriptive interpretive design to explore parents’ perception of the parental role	7 parents of 7 children admitted to the PICU and being prepared for discharge. 2 fathers and 5 mothers.	75%	Three main themes emerged: (1) being present and participating in the child’s care; (2) forming a partnership of trust with the PICU health care team; and (3) being informed of the child’s progress and treatment plan as the person who “knows” the child best.
Baird et al. (2015), United States	Grounded theory approach to identify best practices in parent/nurse interactions in the PICU for the parents of children with complex chronic conditions. Symbolic interactionism framework	7 parents of children admitted to a PICU with complex chronic conditions. 5 mothers and 2 fathers.	100%	The existence of explicit and implicit rules in a PICU were identified, all of which negatively affected the family’s ability to receive care that was attentive to their needs.
Carnevale et al. (2007), France and Quebec, Canada	Grounded theory approach to examine whether physicians or parents assume responsibility for treatment decisions for critically ill children and how this relates to subsequent parental experience	19 mothers, 12 fathers of children in the PICU.	75%	In France, physicians were predominantly the decision makers, in Quebec, parents were the most common decision maker.
Carnevale et al. (2011), Italy	To report on how life-sustaining treatment decisions are made for critically ill children in Italy, and how these decisional processes are experienced by physicians, nurses, and parents. Cultural interpretive framework	9 parents of children who had a life-sustaining decision made in the PICU. 7 mothers, 2 fathers.	75%	Uncovered “private worlds” of parents in the PICU. Parents struggle with their dependence on physicians and nurses to provide care for their child and strive to understand what is happening to their child.
Colville et al. (2009), United Kingdom	Qualitative portion of a larger mixed methods study reporting on the psychological distress in parents 8 months after child’s discharge from PICU	50 parents of 34 children. (17 mother father pairs, 15 mothers, 1 father)	75%	Parents report significant and persisting distress after having a child previously admitted to the PICU.
DeLemos et al. (2010), United States	Qualitative portion of a larger mixed methods study to explore the role of communication in building trust between intensivists and parents	122 parents of 96 children admitted for at least 48 hours in a PICU. 87 mothers and 34 fathers.	75%	Parents articulated that communication was integral to building trust. Parents wanted communication that was honest, inclusive, compassionate, clear and comprehensive, and coordinated.
De Weerd et al. (2015), Netherlands	Longitudinal approach to describe the perceptions of parents, doctors, and nurses of suffering of critically ill children	29 parents of 29 children admitted to a PICU	75%	Parents considered suffering caused by or associated with visible signs as discomfort. Various aspects of the child’s suffering and admission to a PICU caused suffering in parents.
Author, year, country	Approach/Aim	Sample Characteristics	Quality Score	Results
Gaudreault & Carnevale (2012), Canada	Grounded theory approach to examine the experiences of parents encountering the critical deterioration and resuscitative care of another child in the PICU where their own child was admitted	10 parents of critically ill children who witnessed the resuscitation of another child. 4 fathers, 6 mothers.	75%	Despite using coping strategies, the experiences were distressing in the majority of cases, although sometimes comforting. Witnessing critical events had divergent effects on parental trust with healthcare professionals.
Graham et al. (2009), United States	Exploratory approach to describe the experience of PICU hospitalization from the perspective of parents of children with severe, antecedent disability	8 parents of 8 children admitted to a PICU with severe antecedent disabilities. 7 mothers, 1 father.	100%	Major themes emerged including: know my child’s baseline, integrate and bridge multiple services, disconnect between role of parent at home vs. parent in the PICU, high-stakes learning environment, PICU admission does not equate with respite, heterogeneity within group, and lack of fit within the acute care model.
Latour et al. (2011a), Nethlerlands	Retrospective approach to explore and to identify accounts of the parents’ experiences of a PICU admission of their child	39 mothers, 25 fathers of 41 children discharged from PICUs.	75%	Six major themes emerged including: attitude of the professionals, coordination of care, emotional intensity, information management, environmental factors, and parent participation.
McGraw et al. (2012), United States	Retrospective approach to examine how parents of children dying in the pediatric intensive care unit understood their role and discuss implications for care and policy	Parents of 18 children who died in a PICU.	75%	Many of the factors deemed important by parents related to their capacity fo be a “good parent” to their child throughout their stay in the PICU.
Macdonald et al. (2012), Canada	Ethnographic approach to examine the experience of families whose children were hospitalized in a PICU	18 children. 17 mothers, 11 fathers of children hospitalized in a PICU	75%	Thre was a disconnect between the espoused model of FCC and quotidian professional practices.
Majdalani et al. (2014), Lebanon	Phenomenological approach to understand the lived experience of Lebanese parents of children admitted to the PICU in Beirut	10 parents of children admitted to a PICU for at least 48 hours, 5 mothers, 5 fathers.	100%	All parents described their experience in the PICU as strange, new and mysterious. They described their experience as a “journey into the unknown”.
Mattsson et al. (2014), Sweden	Phenomenological approach to investigate the meaning of caring in the PICU from the perspective of parents. Guided by the caring theory	7 mothers, 4 fathers of 7 children admitted to PICUs.	100%	The phenomenon of caring is experienced exclusively when it is directed toward the child. The following aspects of caring were illustrated in the themes arising from the findings: being a bridge to the child on the edge, building a sheltered atmosphere, meeting the child’s needs, and adapting the environment for family life.
Maxton (2008), Australia	Phenomenological approach to provide understanding of the meaning for parents who were present or absent during a resuscitation attempt on their child in the PICU	Parents of 8 children who experienced a resuscitation event in the PICU. Eight interviews, 2 with only one parent, 6 with both parents.	75%	There is an inherent need for parents to choose to be present during resuscitation to make sense of the situation. Those who did not witness their child’s resuscitation were more distressed than those who did.
Meert et al. (2007), United States	Retrospective approach to investigate parents’ perspectives on the desirability, content, and conditions of a physician-parent conference after their child’s death in the PICU	56 parents of 48 children who had died in a PICU. 37 mothers, 17 fathers, 2 other.	75%	Many parents want to meet with the intensive care physician after their child’s death. Parents seek to gain information and emotional support, and to give feedback about their PICU experience.
Meert et al. (2008), United States	To explore parents’ environmental needs during their child’s hospitalization and death in the PICU	33 parents of 26 children who died in a PICU. 20 mother, 12 father, 1 other.	75%	The PICU environment affects parents at the time of their child’s death and produces memories that are vivid and long lasting.
Meert et al. (2008), United States	Secondary analysis approach to describe parents’ perceptions of their conversations with physicians regarding their child’s terminal illness and death in the PICU	56 parents of 48 children who died in a PICU. 37 mothers, 17 fathers, 2 other.	75%	When discussing bad news, parents want physicians to be accessible and to provide honest and complete information with a caring affect, using lay language, and at a pace in accordance with their ability to comprehend.
Meert et al. (2009), United States	To gain a deeper understanding of parents’ needs around the time of their child’s death in the PICU	Interview: 33 parents of 26 children who died in a PICU. 20 mother, 12 father, 1 other. Focus Group: 13 parents of 10 children who died in a PICU.	75%	Four overarching categories of parental need emerged: who I am, while my child was dying, my child’s death context, and my bereavement journey.
Meyer et al. (2006), United States	Retrospective approach to identify and describe the priorities and recommendations for end-of-life care and communication from the parents’ perspective	56 parents of children who died in a PICU after withdrawal of life support. 36 mothers, 20 fathers.	75%	Parents identified six priorities for end of life care including honest and complete information, ready access to staff, communication and care coordination, emotional expression and support by staff, preservation of the integrity of the parent-child relationship, and faith.
Michelson et al. (2011), United States	Retrospective approach to examine clinicians’ and parents’ reflections on pediatric intensive care unit family conferences in the context of discussion about end of life decisionmaking	18 parents of 13 children who died in a PICU. 11 mothers, 7 fathers.	75%	Limited data from parents limited the ability to comment on parent perceptions of family conferences.
Author, year, country	Approach/Aim	Sample Characteristics	Quality Score	Results
Oxley (2015), United Kingdom	Phenomenological approach to explore the lived experiences of parents whose children have been admitted to a PICU	5 mothers, one couple of children hospitalized in a PICU.	50%	The lived experience of a parent with a child in the PICU is fraught with varying emotions with the beginning of the journey and the ending of the PICU admission causing the most anxiety.
Rennick et al. (2011), Canada	To describe how mothers experienced involvement in their children’s care through a Touch and Talk intervention	65 mothers of children undergoing an invasive procedure in the PICU.	75%	The overarching theme centred on the importance of comforting the critically ill child, this included being there for the child, making a difference in the child’s pain experience, and feeling comfortable and confident
Smith da Nobrega Morais & Geraldo da Costa (2009), Brazil	To understand the existential experience of mothers of chidlren hospitalized in a PICU. Framed by the humanistic nursing theory	5 mothers of children admitted to a PICU.	75%	The relationship between mothers and the nursing professionals throughout the PICU stay was important. Mothers reported experiencing fear, despair, and loneliness in the face of the child’s PICU stay.
Stickney et al. (2014a), United States	To compare perceptions, goals, and expectations of health care providers and parents regarding parental participation in morning rounds and target specific areas of opportunity for educational interventions	13 mothers, 6 fathers, 2 other of children admitted to a PICU.	75%	Parents believed goals for rounds included helping parents achieve an understanding of the child’s current status and plan of care. Parents reported a strong desire to provide expert advice about their children and expected transparency from the care team.
Vasli et al. (2015), Iran	Ethnographic approach to define culture of FCC in PICU of one of the Iranian hospitals and to detect its related cultural and baseline factors	4 parents of children admitted to a PICU.	100%	The prevailing atmosphere in care was paternalistic as there was a huge gap between conceptually or theoretically accepted application of FCC in PICU and what is practically administrated.
Quantitative Designs
Abuqamar et al. (2016), Jordan	Cross-sectional descriptive design to identify parental perceptions on pediatric intensive care-related satisfaction within three domains: child’s care, environment and parent-staff communication	123 parents of children admitted to a PICU with chronic underlying conditions. 45 fathers, 78 mothers.	100%	Availability of health care professionals, the support and the information they share with the child’s parents are all significant to parent’s satisfaction and hence to better quality of care.
Aronson et al. (2009), United States	Prospective observational design to determine the impact of family presence during PICU rounds on family satisfaction, resident teaching, and length of rounds	100 family members. 67 mothers, 26 fathers, 7 other.	75%	On the first day of admission, family members were less likely to understand the plan, to feel comfortable asking questions, or to want bad news during rounds. They were more likely to have privacy concerns and to want one individual to convey the plan after rounds. Family satisfaction with being present for rounds was high, family members liked being present (98%) and thought (97%) it was helpful to hear the entire presentation and discussion of their child’s case.
Drago et al. (2013), United States	Observational approach to explore whether family characteristics or opinions affected their likelihood of being present on rounds or the family’s perception of rounds	100 family members of children in a PICU, 67 mothers, 26 fathers, 7 other.	75%	Families felt that participating in family centered rounds improved the care of the child.
Ebrahim et al. (2013), Canada	Prospective longitudinal approach to describe parent satisfaction, involvement, and presence after admission to PICU	103 parents of 91 children previously admitted to a PICU.	100%	Parent satisfaction was high, however satisfaction was lower in parents of children receiving more ICU therapies.
Jee et al. (2012), United Kingdom	Prospective cohort approach to evaluate and compare the needs, stressors, and coping strategies of mothers and fathers in a PICU	91 sets of parents of children admitted to a PICU. 91 mothers and 91 fathers.	100%	Parents identified the need for honest, open, timely, and understandable information, with access to their child as paramount. Feelings of uncertainty and helplessness were particularly stressful.
Ladak et al. (2013), Pakistan	Non-randomized before-after design to assess whether family-centered rounds improve parents’ and health care professionals’ satisfaction, decrease patient length of stay, and improve time utilization when compared to traditional practice rounds in a population with a low literacy rate, socioeconomic status, and different cultural values and beliefs	82 parents of children who were hospitalized for at least 48 hours in a PICU. 41 from traditional rounds (24 fathers, 17 mothers), 41 from FCC rounds (25 fathers, 16 mothers).	100%	Parents were satisfied with both forms of rounds, however, they appeared to have a greater preference for family-centered rounds. FCC rounds were a resource for parents.
Latour et al. (2011b), Nethlerlands	To explore similarities and differences in perceptions on pediatric intensive care practices between parents and staff	559 parents of children admitted to a PICU	50%	Compared with parents’ perceptions, nurses and physicians undervalued a substantial number of PICU items. Parents rated items related to information provision as important.
Author, year, country	Approach/Aim	Sample Characteristics	Quality Score	Results
Madrigal et al. (2016), United States	Prospective cohort approach to assess sources of support and guidance on which parents rely when making difficult decisions in the PICU	86 parents of 75 children hospitalized in a PICU for greater than 72 hours. 60 mothers, 26 fathers.	75%	Most parents chose physicians, nurses, friends, and extended family as their main sources of support and guidance when making a difficult decision.
Madrigal et al. (2012), United States	To assess parental decision-making preferences in the high-stress environment of the PICU	Parents of 75 children admitted to a PICU for more than 72 hours. 66 mother responses, 29 father responses.	75%	The majority of parents preferred shared decision making (40%) with their doctors or making the final decision/mostly making the final decisions on their own (41%).
Mortensen et al. (2015), Denmark	Cross-sectional approach to investigate the association between parents’ experience of nursing care and levels of traumatisation, to identify potential gender differences within this group, and to examine the possible relationships among the severity of a child’s illness, the parents’ fear of losing their child, and the parents’ experience of support and devlopment of acute stress disorder symptoms	Parents of 47 children admitted to a PICU. 47 mothers, 44 fathers.	75%	One third of parents had ASD or subclinical ASD. Mothers with very young children had higher levels of acute stress. Fathers exhibited higher stress when their children had higher illness severity scores.
Needle et al. (2009), United States	Exploratory approach to examine the impact of parental anxiety on comprehension of medical information within 24 hours of a child’s admission to the PICU	Parents of 35 children admitted to a PICU with high Pediatric Risk of Mortality scores. 27 mothers, 8 fathers.	100%	62% had state anxiety that was significantly higher than a validated sample of patients with GAD. Mechanical ventilation was a significant predictor of high parental state anxiety.
Phipps et al. (2007), United States	Prospective, blinded, observational approach to evaluate parental presence during bedside medical rounds in a PICU	48 mothers, 29 fathers, 3 grandparent, 1 other of children hospitalized in a PICU.	100%	Parents reported satisfaction with participation in rounds, they do not perceive violations to privacy.
Roets et al. (2012), South Africa	To describe emotional support given to mothers of children in ICUs and make recommendations to nurse managers regarding family-centred nursing care in PICU’s in South Africa	62 mothers of children admitted to a PICU.	100%	15 stressors were identified by mothers.
Smith et al. (2007), United States	To identify the impact of providing parent bed space in the PICU, allowing for continual parental presence, on stress of parents of critically ill children	138 mothers, 34 fathers, 5 other of children in PICUs that had undergone renovations.	100%	Stress scores were significantly lower for parents who utilized the parent bed spaces in the new PICUs.
Stickney et al. (2014b), United States	Cross-sectional survey approach to compare the experiences and attitudes of healthcare providers and parents regarding parental participation on morning rounds	70 mother, 28 father, 2 other of children admitted to a PICU	75%	A majority of parents wished to participate in rounds, parents indicated they understood the format and content of rounds.
Sturdivant & Warren (2009), United States	Exploratory descriptive approach to identify and explore the perceived met or unmet needs of family members who had children hospitalized in the PICU. Framed by crisis and human needs theories.	13 mothers, 3 grandmothers, 2 aunts, 1 father, 1 other of childen with a chronic physical condition requiring frequent hospitalizations in a PICU	50%	The overall items under the subscale assurance ranked the highest as perceived needs always met/usually met. The overall items under the subscale support ranked the lowest as perceived needs never met/sometimes met.
Tinsley et al. (2008), United States	Retrospective approach to determine parents’ perception of the effects of their presence during the resuscitation efforts of their child and whether they would recommend the experience to other families	30 mothers, 9 fathers, 2 grandmothers of children who underwent resuscitation and died in a PICU at least 6 months prior.	50%	The majority of parents recommend being present during CPR and believe all families should be given the option to be present.