Foster 2013

496317
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JFN19410.1177/1074840713496317Journal of Family NursingFoster et al.
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Journal of Family Nursing
19(4) 431–468
The Parents’, © The Author(s) 2013
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Perceptions and
Experiences of Family
Centered Care Within
a Pediatric Critical Care
Setting: A Metasynthesis
of Qualitative Research
Mandie Jane Foster, PG Dip, PG Cert, RN1,2,

Lisa Whitehead, PhD, RN1,
Patricia Maybee, EdD, FAANP, PhD, RN1,
and Victoria Cullens, MSN, RN2
Abstract
The delivery of family centered care (FCC) occurs within varied pediatric
care settings with a belief that this model of care meets the psychosocial,
emotional, and physical needs of the hospitalized child and family. The aim of
this review was to explore the attitudes, experiences, and implementation
of FCC from many studies and to facilitate a wider and more thorough
understanding of this practice from a diverse sample of parents, hospitalized
children, and their health care providers within a pediatric critical care setting.
A metasynthesis is an integration of qualitative research findings based on a
1University of Otago, Christchurch, New Zealand

2Christchurch Hospital, Christchurch, New Zealand
Corresponding Author:
Mandie Jane Foster, PG Dip, PG Cert, RN, Centre for Postgraduate Nursing Studies,
University of Otago, PhD office—Level 2, 72 Oxford Terrace, PO Box 4345, Christchurch
8140, New Zealand.
Email: mandie.foster@xtra.co.nz
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432 Journal of Family Nursing 19(4)
systematic review of the literature. Thirty original research articles focusing

on family-centered care experiences from the hospitalized child’s, parents’,
and health care providers’ perception published between 1998 and 2011
met the criteria for the review. Nine syntheses from 17 themes emerged
from the synthesis of the literature: Prehospital, Entry into the Hospital,
Journeying Through Unknown Waters, Information, Relationships, The
hospital Environment, The Possibility of Death, Religion and Spirituality, and
The Journey Home. The individual cultures of the critical care units helped
create and reinforce the context of parental needs where satisfaction with
communication, information, and relationships were interconnecting factors
that helped maintain the positive or negative experiences for the parent,
hospitalized child, and/or health care providers.
Keywords
family-centered care, pediatric critical care, intensive care unit, family,
hospitalized child, health care providers, qualitative studies, integrative
review
From countries to local hospitals around the world, family-centered care

(FCC) has been referenced in the literature as pivotal to the provision of high
quality care for the hospitalized child and family regardless of illness sever-
ity, prognosis, setting, culture, or country (Bowlby, 1952; Darbyshire, 1994;
Platt, 1959; Shields, Pratt, & Hunter, 2006). FCC is an umbrella term for a
model of care that includes concepts of communication, parental needs, treat-
ment, information, spirituality, organizational and parental resources, and
ways to address the psychosocial symptoms of stress, anxiety, depression, or
coping that a hospitalized child or parent may experience or display (Corlett
& Twycross, 2006; Noyes, 1998; Shudy et al., 2006).
The concept of FCC was developed in Britain following the seminal
research by John Bowlby (1952) and the Platt Report (1959). In 1992, the
Institute for Family Centered Care (IFCC), renamed in 2010 as the Institute
for Patient and Family Centered Care (IPFCC), was established in the United
States and assumed some of the roles of the Association for the Care of
Children’s Health (ACCH). The IPFCC’s mission is to integrate the four con-
cepts of respect, dignity, information sharing, and participation and collabo-
ration to promote empowered relationships between patients, families, and
health care professionals. Research over 30 years has reported that the FCC
model of care continues to affect positive and negative health care

Foster et al. 433
experiences for the parent, hospitalized child, and health care professional in
developed and developing countries (Aldridge, 2005; R. Board & Ryan-
Wenger, 2000; Coyne, 2008; Foster, Whitehead, & Maybee, 2010; Tomlinson,
Thomlinson, Peden-McAlpine, & Kirschbaum, 2002).
For the purposes of this review the following definition of FCC was used:
Family centered care is a way of caring for children and their families within
health services which ensures that care is planned around the whole family, not
just the individual child/person, and in which all the family members are recognized
as care recipients. (Shields et al., 2006, p. 1318; Shields, Pratt, Davis, & Hunter,
2007)
The admission of a child into a critical care area in hospital can cause
short- and long-term physical and psychosocial emotional distress for the
child and family (R. Board & Ryan-Wenger, 2000; Noyes, 1998; Shudy
et al., 2006; Smith, Hefley, & Anand, 2007). The individual needs of the
parent and child are varied and can change across different developmental
age spans, treatment regimes, prognoses, and settings (Colville et al., 2009;
Dampier, Campbell, & Watson, 2002; Darvill, Harrington, & Donovan,
2009; Hart & Chesson, 1998). The child is usually subjected to, and the
parents witness to, ongoing monitoring, investigations, and/or lifesaving
treatments that can affect normal childhood growth and development physi-
cally and psychologically (Cejer, 2007; Melnyk, Small, & Carno, 2004;
Rennick & Rashotte, 2009). The parents are known to play a key role as
communication conduits between the health care providers and the child;
however, it cannot be assumed that a parent’s or health care provider’s per-
ception of a hospitalized child’s needs will accurately reflect the child’s
experience, beliefs, or immediate needs (Darvill et al., 2009; Hart &
Chesson, 1998; Karande, Kelkar, & Kulkarni, 2005; Noyes, 2000a). Ideally
the negotiation of care needs to be seen within a holistic synergistic rela-
tionship between the child, parent, health care provider, and immediate
support network (Bartel et al., 2000; Corlett & Twycross, 2006; Harbaugh,
Tomlinson, & Kirschbaum, 2004). Prior recognition and intervention stud-
ies to explore these FCC concepts have been reported (Bouve, Rosmus, &
Giordano, 1999; Linton, Grant, & Pellegrini, 2008; Smith et al., 2007; Van
Waning, Kleiber, & Freyenberger, 2005); yet, despite this research, the rela-
tionship between the health care providers’, parents’, and hospitalized
child’s perception of FCC concepts within critical care areas remains lim-
ited and ambiguous or the recommendations from single studies are limited
in their generalizability to other populations due inherently to the limita-
tions embedded within the individual studies.

Method
Objective
The aim of this review of qualitative research reports was to explore the atti-
tudes, experiences, and implementation of FCC from many studies and to
facilitate a wider and more thorough understanding of this practice from a
diverse sample of parents, hospitalized children, and health care providers
within a pediatric critical care setting.
Design
This metasynthesis of qualitative research reports followed the same format
for the search strategy, quality appraisal and FCC score, extraction, analysis,
and synthesis of data as the previously published systematic review (Foster
et al., 2010) that used the Johanna Briggs Institute web-based program (JBI)
(Joanna Briggs Institute, 2008). The JBI qualitative assessment and review
instrument (JBI-QARI) were used in this review for inductive thematic
extraction, analysis, and synthesis of data. It is hoped that a quantitative lit-
erature review will follow this qualitative literature review using a similar
design that will facilitate future secondary analyses between these metasyn-
theses publications.
Search Method
A search of 6 computerized databases (EMBASE, MEDLINE, The Cochrane
Database of Systematic Reviews, PsycInfo, CINAHL, and AMED) was
undertaken. The search strategy used for MEDLINE is illustrated in Appendix
A. The keywords used for the search included children, health care profes-
sionals, parents, mother, father, siblings, nurses, family, family-centered care,
hospitalization, critical care, intensive care units (ICU), pediatric critical
care, and neonatal intensive care (NICU). The inclusion criteria included pri-
mary qualitative research reports, published in English between 1998 and
2011, on FCC concepts from the health care provider, parent, or hospitalized
child’s perception where there was evidence of collaboration between family/
hospitalized child and/or health care provider in the planning and/or delivery
of care for the child hospitalized within a critical care setting. Due to the large
number of studies retrieved and the difficulty in synthesizing the findings
from heterogeneous qualitative and quantitative studies, this review focused
on the secondary analysis and findings of only primary qualitative studies.
Each study needed a JBI methodological appraisal score of ≥ 7/10 and a FCC

Foster et al. 435
score of ≥ 32/52. The reference lists and authors were checked for all included
studies and further publications.
The degree of family-centeredness score for each article was rated using a
FCC framework utilized in previous studies (Foster et al., 2010; Shields, Pratt,
Flenady, Davis, & Hunter, 2003; Shields et al., 2007; Shields, Zhou, Pratt, Taylor,
Hunter, & Pascoe, 2012) with a reported median Cohen’s Kappa score of 0.85 for
each element (Trivette, Dunst, Allen, & Wall, 1993). This framework contained 9
core FCC elements that were delineated into 13 corresponding evaluative items
and further grouped into 3 cluster groups to give an overall family-centeredness
score as set out in Tables 1 and 2 (Johnson, 1990; Shelton, Jepson, & Johnson,
1987; Trivette et al., 1993). A score of 0 to 4 was given to each evaluative item (n
= 13), where 0 showed no implicit or explicit evidence of FCC, and 4 showed
numerous instances of explicit evidence of FCC. An implicit element of FCC
was where the author showed inference to the elements of FCC, whereas explicit
evidence included FCC concepts being distinctly expressed. The scores were
added together to give an overall score for degree of family-centeredness that
could range from 0 to 52 where a score of ≥ 32 indicated a high degree of family
centeredness. All abstracts, included and excluded studies, and JBI and FCC
scores were independently and jointly assessed whereby a consensus was reached
by 2 and/or 3 members of our research team.
A rating of 0 to 4 was given to each of the 13 subelements of FCC as fol-
lows. Excluded articles (N = 259) included studies conducted within the com-
munity, ward, NICU, or child hematology oncology centers (CHOC) as
including this data may have threatened the depth and rigor of the findings
being specific to pediatric critical care. All quantitative, anonymous, and per-
sonal case stories were excluded.
Data Extraction and Synthesis

The qualitative data were extracted from studies using the JBI-QUARI
extraction tool that included the thematic extraction, analysis, and synthesis
of data on themes, subthemes, and phenomena of FCC concepts (Joanna
Briggs Institute, 2008). The key findings were identified from each research
team member’s interpretation and then reflected on jointly over numerous
sessions where a consensus was reached on the overall extraction, analysis,
and synthesis of data into codes, categories, themes, and syntheses which
were then entered into the JBI web-based program by one designated research
team member. The JBI 4-stage process included identification of (a) 422 find-
ings (117 codes); (b) 51 categories; (c) 17 themes; and (d) 9 syntheses clus-
tered together on similarity of meaning, where new theme names were
created, as set out in Table 3.

Table 1. Family-Centered Care Clusters.
Cluster Subelement Concept

1 1, 2, 4, 6, 11, 13 Family as a constant: family as a constant in
child’s life, recognizing family strengths, parent/
professional collaboration, needs-based family
support, flexible provision of health care, sharing
information with families
2 3, 10, 12 Culturally responsive: culturally competent health
care, respecting family diversity, providing financial
support
3 5, 7, 8, 9 Supporting family individuality: respecting family
coping methods, providing emotional support,
family-to-family support, attending to the
developmental needs of children and families
Note. Adapted from Johnson 1990; Shelton, Jepson, & Johnson, 1987; and Trivette, Dunst,
Allen, & Wall, 1993.
Table 2. Family-Centered Care Rating Scale.
Score Evidence
0 Article includes no evidence that the author(s) either implicitly or
explicitly addressed, endorsed, or advocated adoption or adherence
to the element of FCC.
1 Article includes a minimal amount of implicit evidence that the
author(s) advanced adoption or support of the element of FCC.
2 Article includes numerous instances of implicit evidence that the
author(s) advanced adoption or support of the elements of FCC.
3 Article includes a minimal amount of explicit evidence that the
4 Article includes numerous instances of explicit evidence that the
Note. Adapted from Johnson, 1990; Shelton, Jepson, & Johnson, 1987; and Trivette et al.,
1993.
During the metasynthesis, an audit trail was kept on the search process,
article content, possible interpretations, judgments, and quotes used to vali-
date interpretations. Any disagreements that arose between the research team
members were resolved through ongoing discussion, reflection, and peer
review with clinical professionals until a consensus was reached with all four
research team members. Two research team members were listed as JBI
assessors, held doctorate and master’s degrees, and were PhD supervisors

Foster et al. 437
Table 3. Characteristics of Synthesis.
Syntheses (findings, Themes (findings,

codes) categories) Categories (total number)
Prehospital (8, 5) Pre-PICU admission (8, 3) General practitioner,
helpline, frustration (3)
Entry into the Changing priorities (6, 4) Crisis, work, siblings,
hospital (10, 6) Everyday life pressures parental needs,
(4, 3) housework, meals,
parental chores (7)
Journeying through Suffering (46, 4) Vigilance, presence,
unknown waters Parental coping strategies caregiving, reassuming
(111, 35) (33, 5) the parental role, coping,
Time to engage (8, 1) different time periods,
Childs’s experience separation, grandparents
(24, 1) suffering, parents suffering,
living uncertainties, child’s
memories (11)
Information (80, 18) Knowledge (31, 1) Advice, dominant physician
Parental decision making approach, conversations,
(34, 5) parents decision, include
Communication (15, 2) the child, family meetings,
physician daily updates,
parental understanding
and acceptance (8)
Relationships (77, 14) Child and family Child, grandparent or
relationships with staff parent relationships
(41, 1) with staff, relationships
Family interrelationships between staff, staff coping
(25, 3) strategies, family relations,
Staff interrelationships sibling distress, parental
(11, 2) support (6)
The hospital Pediatric intensive care Context, quiet room,
environment and general wards limited hospital resources,
(40, 17) (40, 4) PICU transfer or
discharge (4)
The possibility of Ethics in end of life care Ethics, care, death (3)
death (25, 6) (25, 3)
Religion and God and transcendence Prayer, belief, hope, end of
spirituality (47, 7) (47, 4) hope (4)
The journey home Life after the illness Prognosis, homecare,
(24, 9) (24, 5) deficits, morbidity, school
(5)
Note. Findings = the number of times this finding was mentioned in the studies; codes and
categories = the number of codes or categories in the syntheses or themes.

and senior lecturers for university faculties; one research team member held
a master’s degree and clinical nurse specialist role within a pediatric high
dependency unit; and one research team member was a doctoral student.
Expert advice included further input from pediatric educators, clinical nurse
specialists, managers, senior lecturers, and doctoral students.
Results
The search strategy generated 2,518 hits where 291 unique citations were
identified (Figure 1). The majority of articles (N = 259) were excluded because
they did not meet the inclusion criteria for time frame, degree of family cen-
teredness, methodological design, quality, and setting or where the findings of
a mixed pediatric intensive care unit (PICU), pediatric high dependency unit
(PHDU), general ward, or NICU sample were not reported separately.
Following a review, 26 publications were identified for inclusion. A
review of the article reference lists led to the inclusion of an additional 4
publications. Of these 30 publications, 4 studies have published various
stages of their results in different journals. A flowchart for the selection and
exclusion of studies is presented in Figure 1. The majority of articles (N = 29)
were retrieved from nursing and medical journals and originated from 10
countries. The individual characteristics of the included studies, JBI quality
appraisal, and FCC score are shown in chronological order in Table 4.
The findings are based on a data set that included 22 research reports of
parents’ viewpoints; 5 research reports of the hospitalized child’s perception;
5 on the nurses’ perception; 5 on the extended family members’ viewpoints;
4 on the doctors’ viewpoints; 3 on the grandparents’ experiences; and 1 study
that focused on the ministers’ (clergy) recommendations and viewpoints. Of
the 30 studies, 14 used a theoretical framework, 19 used a descriptive, inter-
pretive, or inductive design, 6 a phenomenological design, 5 a grounded
theory design, and 2 studies made reference to a FCC definition. The FCC
score ranged from 32 to 52 with a mean average of 38.73 and the JBI score
mean average was 9.2 where item 7 had the highest number (n = 10/30) of no
responses as illustrated in Appendix B. The term “parent” in this review
included the parent, caregiver, next of kin, or significant other person,
whereas “health care providers” included professionals from varied disci-
plines who had direct contact with the family or child in the pediatric inten-
sive care unit.
The 9 syntheses are presented as the parents’, health care providers’, or
hospitalized child’s hospital journey rather than the syntheses being pre-
sented in order of importance or frequency and are set out as a trajectory from
preadmission to hospital through to discharge home. The 9 syntheses that

Foster et al. 439
Inial search strategy generated results(2518)
Potenally relevant studies idenfied (n=291)
) (n=26)
Eligible studies idenfied
Further studies idenfied from the reference list (n=4)
Data extracon and consensus
Data analysis
↓ methodological quality (n=16)
Unable to extract PICU data (n=22)
FCC score < 32 (n=70)
Not primary research (n=151)
Figure 1. Flowchart for selection of studies.
included Prehospital, Entry into the Hospital, Journeying Through Unknown

Waters, Information, Relationships, The Hospital Environment, The
Possibility of Death, Religion and Spirituality, and The Journey Home are
discussed in turn below.
Prehospital
This synthesis included one theme identified as the Pediatric Intensive Care
Unit (PICU) and contained 3 categories (general practitioner, helpline, and

Table 4. Characteristics of Included Studies in Chronological Order.
440
Sample (numbers), Family-centered
Author (year) Country Design/framework, appraisal score care score Data collection
Jarvis (1998) United Kingdom Qualitative study, 10/10 Convenience sample of 19 PICU 1 self-designed 10 item
physicians and 37 nurses, 1 questionnaire with room for
hospital, (n = 56), 32/52 comments
Carnevale (1999) Montreal Phenomenological longitudinal study, Convenience sample of 10 PICU Detailed notes of clinical
Family systems framework (Wright & families (10 fathers, 8 mothers, 9 observations, conversations
Leahey, 2013), 9/10 siblings), 1 hospital, (n = 27), 32/52
Noyes (1999) United Kingdom Exploratory grounded study, Crisis and Purposive sample of 10 PICU Focused interviews, diaries
coping (Lazarus, 1966) & Symbolic mothers, 1 hospital, (n = 10),
interactionism (Blumer, 1969), 10/10 44/52
Noyes, Hartman, United Kingdom Exploratory qualitative study, 10/10 Purposive sample of 7 PICU families, Self-designed 19 item evaluation
Samuels, and 1 referral center, (n = 7), 32/52 questionnaire with open-ended
Southall (1999) questions, medical notes
Tomlinson, Swiggum, United States of Exploratory descriptive qualitative Convenience sample of 29 PICU Background data sheet, Health-
and Harbaugh (1999) America study, 2 phases, Family boundary families, 11 high scoring families, 1 Related Family Ambiguity Scale,
ambiguity theory (Boss & Greenberg, hospital, (n = 22), 40/52 semistructured interviews
1984), 8/10
Bartel et al. (2000) United States of Exploratory descriptive design, 9/10 Purposive and theoretical sample of Focus groups, in-depth interviews,
America 22 PICU physicians, 1 hospital, semistructured interview guide
(n = 22), 34/52
Noyes (2000a) United Kingdom Phenomenological study, Purposive sample of 18 PICU Focused face-to-face interviews, talk
Noyes (2000b) Phenomenological approach (Morse & children (10 boys, 8 girls) and and draw/play, field notes
Noyes (2002) Field, 1996) & Patient-centered needs 15 parents, 7 hospitals, (n = 33),
(Pickin & St. Leger, 1993), 9/10 52/52
Playfor, Thomas, and United Kingdom Descriptive qualitative study, 7/10 Convenience sample of 38 PICU Semistructured interviews, draw
Choonara (2000) children (20 girls, 18 boys), 1 picture

hospital, (n = 38), 36/52
Jefferson and Paterson Vancouver Qualitative interpretive study, Different Theoretical sample of 10 PICU Semistructured interviews, field
(2001) experiences (Brown & Ritchie, 1990; nurses (9 female, 1 male) and 5 notes
Goodell, 1979), 9/10 physicians (5 male), 1 hospital,
(n = 15), 32/52
(continued)
Table 4. (continued)
Dampier et al. (2002) United Kingdom Phenomenological study, Family Convenience sample of 15 PICU In-depth semistructured interviews
experiences (Benner, 1994), 10/10 families, 1 hospital, (n = 15), 48/52
Bousso and Angelo Brazil Qualitative grounded theory, 7/10 Convenience sample of 9 PICU Systematic observations, open
(2003) families (9 mothers, 6 fathers, 2 interviews, genograms
grandmothers, 1 aunt, 6 siblings), 2
hospitals, (n = 24), 32/52
Colville, Orr, and United Kingdom Retrospective qualitative study, 7/10 Convenience sample of 233 PICU 1 self-designed 6-item evaluation
Gracey (2003) parents, 1 retrieval service, 3 questionnaire with open-ended
hospitals, (n = 233), 32/52 questions
Meiers and Tomlinson United States of Hermeneutic phenomenological study, Convenience sample of 4 PICU Semistructured in-depth interviews,
(2003) America Symbolic interactionism (Blumer, family–nurse dyads (4 mothers, 1 field notes
1969) & Existential phenomenology father, 3 female and 1 male nurse),
(Merleau-Ponty, 1962), 10/10 2 hospitals, (n = 9), 48/52
Hall (2004a) Danish Exploratory inductive phenomenological Convenience sample of 7 PICU In-depth interviews
Hall (2004b) study, Human caring perspective grandparents (7 grandmothers,
(Benner & Wrubel, 1989) & Family 7 grandfathers), 1 hospital, (n =
systems theory (Wright & Leahey, 14), 40/52
2013), 9/10
Harbaugh et al. (2004) United States of Qualitative study, Family Systems Model Convenience sample of 10 PICU Semistructured interviews
America (Whitchurch & Constantine, 1993), families (10 mothers, 9 fathers), 1
9/10 hospital, (n = 19), 44/52
Board (2005) United States of Qualitative descriptive study, Stress and Convenience sample of 21 PICU Structured interviews, Schoolagers’
America Coping Model (Lazarus, 2000), 10/10 children (11 girls, 10 boys), 2 Coping Strategies Inventory, Child

hospitals, (n = 21), 32/52 Drawing: Hospital
Karande et al. (2005) India Qualitative study, 10/10 Prospective convenience sample of Semistructured interviews, drawings
50 PICU children (31 boys, 19
girls), 1 hospital, (n = 50), 32/52
(continued)
441
442
Meert, Thurston, and United States of Qualitative study, 3 phases, 10/10 Convenience sample of 33 PICU In-depth parent interviews, focus
Briller (2005) America parents (20 mothers, 12 fathers, groups, diaries
Meert, Briller, Myers 1 grandmother), 13 parents
Schim, and Thurston (9 mothers, 4 fathers) and 15
(2008) chaplains (12 female, 3 male), 1
Meert, Briller, Myers hospital, (n = 61), 52/52
Schim, Thurston, and
Kabel (2009)
O’Haire and Blackford Australia Qualitative grounded study, 9/10 Theoretical sample of 9 PHDU Semistructured interviews, focus
(2005) nurses (8 female, 1 male), 1 groups
hospital, (n = 9), 36/52
Diaz-Caneja, Gledhill, United Kingdom Retrospective qualitative study, 9/10 Purposive sample of 11 PICU parents Semistructured in-depth interviews
Weaver, Nadel, and (10 mothers, 1 father), 1 hospital,
Garralda (2005) (n = 11), 40/52
Haines (2005) United Kingdom Heideggerian phenomenological study, Convenience sample of 7 PICU Long focused interviews
9/10 parents (5 mothers, 2 fathers), 1
hospital, (n = 7), 40/52
Haines and Child United Kingdom Qualitative descriptive study, 8/10 Convenience sample of 110 PICU 1 self-designed evaluation
(2005) parents, 1 hospital, (n = 110), questionnaire with open-ended
32/52 questions
Hall (2005) Danish Qualitative descriptive study, Human Convenience sample of 13 PICU In-depth interviews
Caring Perspective (Benner & parents (13 mothers, 12 fathers), 1
Wrubel, 1989) & Nursing Care hospital, (n = 25), 32/52
Paradigm (Eriksson, 1995), 10/10

Sharman, Meert, and United States of Prospective qualitative study, 10/10 Convenience sample of 10 PICU In-depth semistructured interviews
Sarnaik (2005) America families (9 mothers, 5 fathers), 1
hospital, (n = 14), 48/52
(continued)
Carnevale et al. (2006) Paris Qualitative grounded theory, French Convenience purposive sample of Semistructured interviews
National Guidelines (Hubert, Canoui, 5 PICU families (5 mothers, 2
Cremer, & Leclerc, 2005), 10/10 fathers), 1 hospital, (n = 7), 36/52
Meyer, Ritholz, Burns, United States of Qualitative study, 10/10 Convenience sample of 56 PICU Parental Perspectives Questionnaire
and Truog (2006) America parents (36 mothers, 20 fathers), 3 with open-ended questions
Robinson, Thiel, hospitals, (n = 56), 52/52
Backus, and Meyer
(2006)
Carnevale et al. (2007) France, Quebec, Qualitative grounded theory, 10/10 Convenience purposive sample of Semistructured interviews,
Canada 19 PICU families (19 mothers, structured interviews, field notes,
12 fathers), 9 physicians and 13 observations
nurses, 4 hospitals, (n = 53), 32/52
Meert, Eggly, et al. United States of Qualitative study, 10/10 Convenience sample of 48 PICU Semistructured telephone interviews
(2008) America families (37 mothers, 17 fathers, 2
legal guardians), 6 hospitals, (n =
56), 48/52
Rennick, McHarg, Canada Inductive descriptive qualitative study, Convenience sample of 22 PICU Semistructured individual interviews,
Dell’Api, Johnston, 2 phases, Model of Childhood parents (18 mothers, 4 fathers), 18 focus groups, field notes, story
and Stevens (2008) Traumatic Stress (Pynoos et al., children (10 boys, 8 girls) and 12 board techniques
1995), 9/10 staff, 3 hospitals, (n = 52), 40/52
Colville et al. (2009) United Kingdom Cross-sectional mixed method cohort Convenience sample of 34 PICU Semistructured interviews and open-
study, Parental stress and coping families (32 mothers, 18 fathers), 1 ended questions

(LaMontagne, Johnson, & Hepworth, hospital, (n = 50), 32/52
1995; Lazarus, 1966), 9/10
443
frustration), 5 codes, 8 findings, and was represented in 4 of the 30 studies.

Prehospital included the experiences felt by parents during the assessment,
immediate treatment, referral, and transport of the child to the hospital. Three
families in the Dampier et al. (2002) study experienced difficulty in accessing
medical assistance; 5 mothers and 2 fathers in the Haines (2005) study
described feelings of primary health care dismissal; and 2 mothers in the
Noyes (1999) study felt physically and mentally exhausted. Three mothers in
the Noyes (1999) study intuitively knew when to seek medical advice and 1
mother further described how she felt empowered for “good parenting” as a
result of this. One mother in the Noyes, Hartman, Samuels, and Southall
(1999) study reported high levels of anxiety tending to an unwell child at
home, and 1 mother in the Colville et al. (2009) study experienced high levels
of anxiety with the journey into hospital.
Entry Into the Hospital

This syntheses included 2 themes (changing priorities and everyday life pres-
sures), 7 categories, 6 codes, and 10 findings.
Changing priorities. This theme contained 4 categories (including crisis, work,

siblings, and parental needs), 6 findings, and was represented in 3 of the 30
studies. Changing priorities encompassed aspects where the immediate care
of the child and preservation of the family unit was paramount; work, sib-
lings, and the parents’ ability to meet their own psychosocial, emotional, and
physical needs became secondary (Bousso & Angelo, 2003; Dampier et al.,
2002; Hall, 2004b). This was evident in the Dampier et al. (2002) study where
health care providers offered sleeping facilities and food for families; yet 2
of the 15 parents were unable to sleep or eat until their child had improved.
Everyday life pressures. This theme contained 3 categories (housework, meals,

and parental chores), 4 findings, and was represented in 3 of the 30 studies.
Everyday life pressures included parental activities of daily living such as
work responsibilities, child care, and maintaining the home (cooking meals,
washing, and housework). A few mothers reported intense strain and loss of
personal self with the increased responsibilities and subsequent workload of
visiting the sick child in hospital, work commitments, maintaining the home,
and caring for other siblings as described by a few mothers in the Carnevale
(1999) study and 2 mothers in the Meert, Briller, Myers Schim, and Thurston
(2008) study. In the Bousso and Angelo (2003) study, 1 family experienced
social pressure to return to work after 1 day of sick leave despite a medical
certificate.

Foster et al. 445
Journeying Through Unknown Waters

Journeying through unknown waters included aspects of the hospital admis-
sion as a series of pathways that families inevitably followed. This synthesis
included 4 themes (suffering, parental coping strategies, time to engage, and
the child’s experience), 11 categories, 35 codes, and 111 findings.
Suffering. This theme contained four categories (separation, grandparents

suffering, parents suffering, and living uncertainties), 46 findings, and was
represented in 21 of the 30 studies. Suffering was a common underlying
theme that was evident in most studies and predominantly elicited negative
experiences. Some of the suffering reported by parents and grandparents
included feeling overwhelmed with guilt, fear, shock, disbelief, blame, and
apprehension. This was evident for 3 of the 8 mothers in the Carnevale
(1999) study; all the mothers (n = 10) in the Noyes (1999) study; all the
grandmothers (n = 7) and grandfathers (n = 7) in the Hall (2004a, 2004b)
studies; 9 of the 33 parents in the Meert, Thurston, and Briller (2005)
study; 8 of the 14 parents (n = 6/9 mothers; n = 2/5 fathers) in the Sharman,
Meert, and Sarnaik (2005) study; 6 of the 7 parents in the Carnevale et al.
(2006) study; and 6 of the 31 parents in the Carnevale et al. (2007) study.
These experiences were related to past, present, or future perceptions of
an illness event such as a lack of knowledge (Harbaugh et al., 2004; Meert
et al., 2005); the child’s altered physical appearance (Dampier et al., 2002;
Haines, 2005; Harbaugh et al., 2004; Noyes, 1999); disturbing scenes wit-
nessed by parents or children within the PICU (Bousso & Angelo, 2003;
Colville et al., 2009; Haines, 2005; Noyes, 2000a); remembrance of past
losses as evident for 1 couple in the Hall (2005) study; long unnecessary
PICU stays remembered by 17 of the 18 children in the Noyes (2002) study;
physical exhaustion for 1 father in the Meert, Briller, et al. (2008) study;
death (Bousso & Angelo, 2003; Meert et al., 2005; Sharman et al., 2005); or
the psychological and physical effects of withdrawal from sedative medica-
tion for 1 mother in the Haines (2005) study.
Family uncertainty was a concept mentioned in 8 of the 30 studies where
parents experienced pain, ambivalence, and stress with the interhospital
transfers, long waits, unknown diagnosis, PICU trajectory, and/or outcome
for the child. This was seen in 1 family in the Bousso and Angelo (2003)
study; 2 families in the Carnelvale et al. (1999) study; 170 of the 233 parents
in the Colville et al. (2003) study; 1 mother in the Colville et al. (2009) study;
2 parents in the Diaz-Caneja, Gledhill, Weaver, Nadel, and Garralda (2005)
study; 1 mother in the Meiers et al. (2003) study; and 7 of the 10 mothers in
the Noyes (1999) study.

Of interest, all the nurses in the Meiers et al. (2003) study were aware of
the family’s distress and also experienced their own professional and per-
sonal uncertainty with the child’s condition and ability to provide and main-
tain positive working relationships with the child and family. Parental
separation from the sick child for resuscitation, transfer, or medical proce-
dures was reported by 2 of the 233 parents in the Colville et al. (2003) study
as “the worst journey of our lives” (p. 105), or where the role of being the
protective parent changed to being the helpless onlooker (Haines, 2005;
Haines & Childs, 2005; Meert, Briller, et al., 2008). Parents reported living a
roller-coaster ride of uncertainties with the unknown length of stay and prog-
nosis as recounted by 1 mother in the Carnevale (1999) study and 1 family in
the Bousso et al. (2003) study.
The characteristics of these studies included sample sizes that ranged in
number from 7 to 233; data collected by way of interviews, focus groups, or
long answers during the hospital experience or for up to 5 years postdischarge
where the child was either critically unwell, stable, in alternative care, or
deceased; and included children, parent, and health care provider participants
with a wide range of cultural diversity recruited from one to multicenter
settings.
Parental coping strategies. This theme contained 5 categories (vigilance, pres-

ence, caregiving, reassuming the parental role, and coping), 35 findings, and
was represented in 17 of the 30 studies. Parental coping strategies included
the parents’ actions, behaviors, or thoughts that helped them during this criti-
cal care situation. Parental presence in the hospital was described by 3 par-
ents in the Meert, Briller, et al. (2008) study as being physically close and
able to touch or hold the child; this presence was perceived by 2 fathers and 1
mother in the Tomlinson, Swiggum, and Harbaugh (1999) study and 1 family
in the Bousso et al. (2003) study as beneficial for the emotional and spiritual
well-being of the child or parent. Of interest in the Dampier et al. (2002)
study, 2 families reported they were scared to leave their child unattended in
hospital for fear of neglect.
In the Jefferson and Paterson (2001) study, 10 physicians’ and 5 nurses’
perceptions and subsequent practice on allowing parental presence during
resuscitation or medical procedures were varied. They practiced under differ-
ent philosophies and justified these actions through personal opinion, effi-
cacy of the procedure, or in meeting their own needs instead of the child’s
(Jefferson & Paterson, 2001).
The coping strategies employed by some parents during this time included
breaks away from the PICU for rest, reflection, prayer, or meals (Meert,
Eggly, et al., 2008; Tomlinson et al., 1999); close proximity to the child as

Foster et al. 447
reported by 1 mother in the Noyes (1999) study; avoidance behaviors shown

to the staff, child, or to other PICU parents (Diaz-Caneja et al., 2005;
Robinson, Thiel, Backus, & Meyer, 2006); or where fathers focused on prac-
tical tasks such as seeking information as outlined by 3 of the 18 fathers in the
Colville et al. (2009) study. In the Hall (2004b) study, 1 grandmother used
vigilance as a coping strategy where the child’s condition and differences in
nursing care practice were closely monitored and subsequently reported back
to other family members. Parental caregiving was perceived by some staff
and parents as part of the parents’ unique relationship with the child and was
either discouraged (N = 12 studies) or encouraged (N = 17 studies) by staff
(Diaz-Caneja et al., 2005; Tomlinson et al., 1999). In addition to parents
wanting this role, 2 parents in the Meyer, Ritholz, Burns, and Truog (2006)
study and 1 mother in the Meert, Briller, Myers Schim, Thurston, and Kabel
(2009) study also reported a need to be acknowledged for this contribution of
care. In the Bousso and Angelo (2003) study, as the prognoses improved, 2 of
the 9 families reported a desire to regain the control of this parental role.
Time to engage. This theme contained 1 category identified as different time

frames, 8 findings, and was represented in 6 of the 30 studies. Variability in
time to engage included aspects of the admission where the parents’ ability
to comprehend information, answer questions, read pamphlets, sign consent
forms, or function in the capacity that health care providers needed or wanted
them to was reduced due to shock, stress, or disbelief (Colville et al., 2003;
Dampier et al., 2002; Hall, 2005). In the Hall (2005) longitudinal study, 1
father was unable to remember or talk about the initial PICU admission after
the child’s discharge from hospital. One mother in the Carnevale et al. (2006)
study and 2 fathers in the Meert, Briller, et al. (2008) study reported that staff
needed to deliver information at the parents’ place, which was reinforced by
1 physician in the Bartel et al. (2000) study who “emphasized the importance
of giving families the time they need to adjust” (p. 1130).
Child’s experience. This theme contained 1 category identified as child’s

memories with 24 findings and was represented in 7 of the 30 studies. The
hospitalized child’s recollection of a PICU stay was varied and appeared to
be influenced by illness, age, medication, treatment, or overall prognosis. In
6 studies there were similarities in the “good” and “bad” experiences of a
PICU hospital stay described by children. These appeared to be in relation to
the PICU setting, medical or nursing procedures, self-internalized thoughts,
or in contact from family or friends. The bad experiences included needles,
medical treatments, nasogastric tubes, noise, inability to move hands or body,
boredom, lack of sleep, isolation, or being placed on a bed where a child had

previously died. The good experiences included people, medical treatment,

and nonmedical activities (Board, 2005; Karande et al., 2005; Noyes, 2000a,
2002; Playfor, Thomas, & Choonara, 2000; Rennick, McHarg, Dell’Api,
Johnston, & Stevens, 2008). Two of the 18 children in the Rennick et al.
(2008) study worried that something else could happen to them or that they
had caused the illness, whereas children who spent long periods of time in
the PICU reported feeling socially in limbo and excluded from normal activi-
ties as illustrated by 1 ventilator-dependent child in the Noyes (2000a) study.
Information
This synthesis included 3 themes (knowledge, parental decision making, and
communication), 8 categories, 18 codes, and 80 findings.
Knowledge. This theme contained 1 category identified as advice, 31 find-

ings, and was represented in 17 of the 30 studies. Knowledge included the
resources and means parents and staff used to receive or deliver informa-
tion about the sick child and the different meanings parents attributed to this
experience. Some of the negative experiences included parents being dis-
satisfied about the lack of information (Carnevale et al., 2006, 2007; Diaz-
Caneja et al., 2005); contradictory information (Bartel et al., 2000; Colville
et al., 2009; Meert, Eggly, et al., 2008); lack of comprehensive information
(Meert, Eggly, et al., 2008; Tomlinson et al., 1999); false hope through incor-
rect information (Meert, Briller, et al., 2008); inability to access staff (Meyer
et al., 2006); information being withheld (Meert, Briller, et al., 2008); poor
discharge management practices (Noyes, 2002); or a lack of introductions to
parents’ of health care provider role, name, or title as reported by 1 father in
the Colville et al. (2009) study.
Conversely, some of the positive experiences included parental satisfac-
tion with information delivery and content (Carnevale et al., 2007; Hall,
2004a); appreciation for books, videos, and Internet access as reported by 1
mother in the Meert, Briller, et al. (2008) study; staff honesty (Meert, Briller,
et al., 2008; Sharman et al., 2005); nurse updates on the child’s unique char-
acteristics; and comfort (Harbaugh et al., 2004; Tomlinson et al., 1999) and
appreciation when care options were discussed as reported by 2 parents in the
Sharman et al. (2005) study.
Some of these experiences were linked to meanings by parents. For exam-
ple, 5 parents linked a lack of explanation to a lack of parental respect in the
Tomlinson et al. (1999) study and 3 parents in the Meert et al. (2005) study
linked comprehensive information as a factor that helped them make deci-
sions and accept their child’s death.

Foster et al. 449
Parental decision making. This theme contained 5 categories (parents’ deci-

sion, include the child, family meetings, physician daily updates, and paren-
tal understanding and acceptance), 34 findings, and was represented in 15 of
the 30 studies. The parents’ experiences with decision making were varied
and dependent on many factors. For example, in the Carnevale et al. (2007)
study many parents (n = 10 out of 31), despite being in a paternalistic medi-
cal context, felt they should be the decision makers. Four parents described
themselves as the child’s overriding decision maker, yet they described this
role as a heavy responsibility that was eased if health care providers knew
the child. Of interest, all the parents in the Carnevale et al. (2006) study felt
physicians were responsible for life-support decisions and, as reported by 1
physician in the Bartel et al. (2000) study, despite physicians making end-of-
life-support decisions, they would always follow the parents’ wishes.
Research trends have evolved over time; studies conducted in the 2nd
millennium and onward started to include children as active research par-
ticipants with an aim to explore the child’s perception of the illness experi-
ence. The inclusion of the child’s voice has been a factor that has helped
many parents make parental decisions. For example, the child’s desire to
live or die helped 1 mother in the Meert et al. (2005) study and 4 parents in
the Sharman et al. (2005) study make a decision and later accept this deci-
sion. Further factors included family meetings as reported by 5 physicians
in the Bartel et al. (2000) study and regular medical updates with accessible
staff (Meert, Briller, et al., 2008; Meert et al., 2009; Meyer et al., 2006;
Tomlinson et al., 1999). Both the parents and children were concerned that
the child was not included in discussions that affected their care (Carnevale
et al., 2006; Noyes, 2000a, 2000b; Sharman et al., 2005). Despite the varied
ways in which information was delivered to parents, the perceptions of ill-
ness severity and treatment decisions between parents alone and with health
care providers can be very difficult (Bartel et al., 2000; Colville et al.,
2009).
Communication. This theme contained 2 categories identified as dominant

physician approach and conversations, 15 findings, and was represented in
9 of the 30 studies. Communication explored the approaches used to deliver
information to parents by health care providers such as body language, tim-
ing, and tempo. In the Meert et al. (2009) study, 7 parents described compas-
sion as being shown through words, actions, and body language or where
information was delivered in a true, sensitive, straightforward, and timely
manner with the significance being discussed. Alternatively, 1 parent in the
Meert, Eggly, et al. (2008) study described a physician’s approach as “cold”
and “matter-of-fact” (p. 4) and another parent suspected malpractice solely

based on the physician’s body language.

In the Carnevale et al. (2007) study, despite Quebec law designating par-
ents as the decision makers, parental accounts implied an overt dominant
physician approach to PICU care. This dominant approach was however sup-
ported by the majority of parents and favorable experiences were directly
related to the appreciation these parents had for this approach. Future recom-
mendations from physicians included the need to pace the tempo of bad news
with words easily understood by parents (Bartel et al., 2000; Meert et al.,
2005), whereas 1 father in the Meert et al. (2009) study needed to build a
relationship of trust with staff prior to receiving information.
Relationships
This synthesis included 3 themes identified as child and family relationships
with health care providers, family interrelationships, and health care provider
interrelationships, 6 categories, 14 codes, and 77 findings.
Child and family relationships with health care providers. This theme con-
tained 1 category identified as child, grandparent, or parent relationships
with health care providers, 41 findings, and was represented in 18 of the 30
studies. The theme of child, grandparent, or parent relationships with health
care providers included the experiences and subsequent relationships that
were determined from the health care providers’, child’s, grandparent’s, or
parent’s point of view. The characteristics that parents valued from staff
within this relationship included truth (Tomlinson et al., 1999); seeing the
child as human and of social worth (Meert et al., 2009; Meyer et al., 2006);
personal warmth, kindness, and compassion shown to the child and par-
ent (Hall, 2004b, 2005; Harbaugh et al., 2004; Meert, Briller, et al., 2008;
Meert et al., 2005; Meyer et al., 2006); patience and nurses seen as trusted
mediators (Meiers & Tomlinson, 2003); humor as this helped ease anxiety
(Colville et al., 2009); health care providers being parent surrogates in the
parents’ absence (Tomlinson et al., 1999); and staff and parents also inter-
connecting on a personal level by sharing stories and opinions (Hall, 2005;
Meert et al., 2005).
Alternatively, negative parental and nurse experiences were reported when
these relationship characteristics were absent such as lack of trust (Hall,
2005); distress (Harbaugh et al., 2004); conflict over disagreements in treat-
ment plans or participation (O’Haire & Blackford, 2005); and parents feeling
“blocked” or “in the way” (Hall, 2004b, 2005). In the O’Haire and Blackford
(2005) study, 7 of the 9 nurses experienced moral distress when parental par-
ticipation in care was not met. In addition 11 children in the Playfor et al.

Foster et al. 451
(2000) study and all the children in the Karande et al. (2005) study remem-
bered a positive experience with staff in the PICU when staff played, talked,
gave food, medicine, smiled, and were kind to them.
Family interrelationships. This theme contained 3 categories identified as fam-

ily relations, sibling distress, and parental support, 25 findings, and was rep-
resented in 11 of the 30 studies. Family interrelationships included the family
dynamics and support network the family used in hospital. Parental and fam-
ily members’ accounts of altered family relationships due to the sick child
were a commonly reported experience. Some of these experiences involved
parental conflict over care, diagnosis, and prognosis as reported by 1 father
in the Meert et al. (2009) study; isolation and insignificance felt by 3 of the
9 siblings in the Carnevale (1999) study; and poor communication or where
family members supported, consoled, and did things together they had not
done before the illness (Bousso & Angelo, 2003; Haines, 2005; Hall, 2004b).
Parental and caregiver support came from extended and immediate family,
health care providers, friends, and other PICU families and was described by
some parents as emotional support and practical help (Meert et al., 2009;
Sharman et al., 2005); spiritual help as reported by 8 parents in the Meert
et al. (2005) study; advice, wisdom, and hope (Bousso & Angelo, 2003; Hall,
2004b; Meert et al., 2005); or social contact through shared stories (Dampier
et al., 2002; Meert, Briller, et al., 2008). However, some parents who relied
on parental support and advice from other PICU parents (Bousso & Angelo,
2003; Haines, 2005; Meert et al., 2005) were also shocked by the different
outcomes for different children. This was recounted by 1 mother in the
Colville et al. (2009) study who avoided contact with parents whose child
was in a more serious condition than her own and 3 parents in the Meert,
Briller, et al. (2008) study who negotiated interactional boundaries with other
parents.
Health care provider interrelationships. This theme contained 2 categories iden-

tified as relationships between health care providers and health care provider
coping strategies, 11 findings, and was represented in 9 of the 30 studies. Of
interest, only the negative experiences of inter–health care provider relation-
ships were described by parents in 7 of the 9 studies. These included incom-
petence and miscommunication between health care providers as described
by 2 parents in the Harbaugh et al. (2004) study; conflict (Meert et al., 2005);
political balancing of patient ownership (Meiers & Tomlinson, 2003); and
lack of team cohesion (Carnevale et al., 2007; Meert et al., 2009), which sub-
sequently caused distress and decreased confidence in health care providers
for the care of the sick child as reported by 1 father in the Meert et al. (2005)

study. Health care provider coping strategies included humor as reported by

1 physician in the Bartel et al. (2000) study and detachment or a need to
include other support personnel as described by 2 nurses in the O’Haire and
Blackford (2005) study.
The Hospital Environment

This synthesis included 1 theme identified as pediatric intensive care and
general wards and contained 4 categories (context, quiet room, limited hospi-
tal resources, and PICU transfer or discharge), 17 codes, 40 findings, and was
represented in 15 of the 30 studies. Some of the parents in the studies were
satisfied with the available hospital resources that included the cafeteria,
meals, library, and showers (Meert et al., 2009; Noyes et al., 1999; Tomlinson
et al., 1999); telephones as reported by 2 parents in the Meert, Briller, et al.
(2008) study; orientation packages (Noyes, 1999); and privacy and safety
(Meert, Briller, et al., 2008; Meert et al., 2009). Many parents commented on
ambivalent feelings of relief and shock with entry into the PICU as reported
by 1 father in the Colville et al. (2009) study as “like stepping into the Star
Ship Enterprise!” (p. 74) and by 3 parents in the Bousso and Angelo (2003)
study who reported a transfer to the ward as lucky and a nontransfer as
unlucky as this could mean the death of their child.
Conversely, some parents commented on the dirt, noise, and odor of the
hospital (Colville et al., 2003; Meert, Briller, et al., 2008); reduced staff num-
bers, time and intensivist care skills (Bartel et al., 2000; Jarvis, 1998; Noyes
et al., 1999); frustration over PICU access as reported by 1 mother in the
Meert, Briller, et al. (2008) study; limited live-in facilities (Dampier et al.,
2002; Meert, Briller, et al., 2008); lack of reverence over death context as
reported by 1 father in the Meert et al. (2009) study; unpreparedness for
transfers as outlined by 2 mothers in the Colville et al. (2009) study; limited
educational activities and social interactions (Noyes, 2000a, 2000b); and the
need for a large meeting room separate yet close to the child (Meert, Briller,
et al., 2008). This request was also advocated for by 2 physicians in the Bartel
et al. (2000) study. In addition, 3 families in the Noyes (1999) study were
concerned about the long-term psychosocial and educational effects that the
hospitalization would have on the child’s normal development which, in turn,
was reinforced by children as the child’s recommendations and awareness of
their PICU stay included a diet of TV, videos and late nights, the death of
other patients, a need for more beds, and the need to have separate rooms for
children who were dying or who had died (Karande et al., 2005; Noyes,
2000a, 2000b).

Foster et al. 453
The Possibility of Death

This synthesis included 1 theme identified as ethics in end-of-life care and
contained 3 categories (ethics, care, and death), 6 codes, 25 findings, and was
represented in 8 of the 30 studies. Some of the parents’ experiences included
dissatisfaction over the reverence of the death context or lack of trust or lim-
ited time spent with the child as described by 2 mothers in the Meert et al.
(2009) study; personal items not being returned as reported by 1 mother in the
Meert et al. (2005) study; parental guilt (Sharman et al., 2005); and satisfac-
tion with PICU access as relayed by 2 parents in the Meert, Briller, et al.
(2008) study. Two parents in the Meert et al. (2005) study (N = 2 in Y = 8
studies) requested a need for preparation in death matters such as grief,
funeral directors, autopsy and organ donation, time alone with family and the
child’s body to grieve (Meert et al., 2009), honest information, and privacy
(Meyer et al., 2006).
In the Bartel et al. (2000) study, 3 of 22 physicians advocated for health
care providers to provide comfort care to enhance a peaceful, reverent end-
of-life context which was supported by 5 parents in the Sharman et al. (2005)
study where decisions on end-of-life care and ongoing suffering were made
based on what the parent would wish for themselves if in a similar situation.
Religion and Spirituality

This synthesis included 1 theme identified as God and transcendence and
contained 4 categories (prayer, belief, hope, and end of hope), 7 codes, 47
findings, and was represented in 18 of the 30 studies. The meaning, signifi-
cance, and ways these needs were met for parents and children were varied.
This was highlighted in the Meert et al. (2009) study where the families’
cultural, spiritual, and religious needs were unique and the ability to meet
these needs were influenced by the institutional, roles, norms, and available
resources. Some of the parents’ spiritual and religious needs included access
and care from clergy as evident by 4 parents in the Robinson et al. (2006)
study; a need for support and connection with the child before, during, and
after death through connection with a transcendent reality (Meert et al., 2005,
2009); and access to prayer, religious rituals, sacred texts, and meditation as
reported by 7 parents in the Meert et al. (2005) study as this strengthened,
gave meaning, hope, faith, and direction on treatment decisions and coping
strategies (Hall, 2004a, 2004b; Meert et al., 2005; Meyer et al., 2006;
Robinson et al., 2006; Sharman et al., 2005).
Further parental experiences included loss of faith as illustrated by 1 par-
ent in the Robinson et al. (2006) study; end of hope as efforts were seen as

unrewarded if the child died as reported by 1 family in the Bousso and Angelo
(2003) study; blaming God as reported by 1 father in the Meert et al. (2005)
study; parents being offended when religious activities outside of their sect
were imposed on them as evident for 2 parents in the Meert et al. (2009)
study; deep spiritual distress as recounted by 1 parent in the Meyer et al.
(2006) study; and parental acknowledgment of positive attributes such as
strengthened relationships, assertiveness, and new meanings ascribed to life
(Colville et al., 2009; Meert et al., 2005).
Health care provider interventions that helped parents included memorials
(Robinson et al., 2006); hope through PICU survival stories (Meert et al.,
2005; Meiers & Tomlinson, 2003); and respect, reverence, trust, and wisdom
as shown when ministers shepherded parents to help them remember life
before PICU as a landmark to move forward from (Meert et al., 2009;
Robinson et al., 2006).
The Journey Home

This synthesis included 1 theme identified as life after the illness and con-
tained 5 categories (prognosis, home care, deficits, morbidity, and school), 9
codes, 24 findings, and was represented in 12 of the 30 studies. For many
parents and children, the discharge home was a unique experience. Some
children did not want to share their PICU experience, had a fear of future
hospital procedures, had unusual dreams, trouble sleeping, felt like life and
relationships were difficult, and wondered what had happened to them or if
life would ever return to normal (Karande et al., 2005; Rennick et al., 2008).
Some parents and families also felt life had changed as evidenced by 2 fami-
lies in the Dampier et al. (2002) study; more protective or tolerant of the child
as reported by 2 of the 11 parents in the Diaz-Caneja et al. (2005) study;
happy with the recovery and developmental progress yet also commented on
the child’s violent behavior once discharged home as portrayed for 2 mothers
in the Noyes (2000b) study; and lack of hospital follow-up (Dampier et al.,
2002; Noyes et al., 1999). A few parents whose child had died in the PICU
wanted to keep mementos of the child’s and connect in with staff who had
known the child as illustrated by 4 parents in the Meert et al. (2005) study and
1 parent in the Meert et al. (2009) study.
Discussion
This metasynthesis included 30 qualitative studies on FCC concepts from 10
countries in 52 different hospitals and 1 referral center. The 9 reported syn-
theses, 17 themes, 51 categories, 117 codes, and 422 findings were all

Foster et al. 455
important factors that helped create an FCC environment. The FCC concepts
that have been referenced in the literature such as communication, informa-
tion, treatment, resources, stress, parental needs, and spirituality were also
referenced to in this review where a positive or negative experience appeared
to be a direct outcome of how these FCC factors were interrelating, which in
turn was influenced by what was deemed as important by the hospitalized
children, parents, and health care providers.
This review highlighted that the way information is received or delivered
by health care providers, parents, and hospitalized children is influenced by
many factors. Communication and information have been identified in the
literature as pivotal for the beneficial operationalization of FCC concepts in
hospital. In the majority of studies included in this review, parents were satis-
fied with either the nurses’ communication styles (n = 6/30; Dampier et al.,
2002; Haines & Childs, 2005; Meiers & Tomlinson, 2003) or the medical
communication styles (n = 4/30; Diaz-Caneja et al., 2005; Meert et al., 2005;
Tomlinson et al., 1999). Honesty, respect, time, and relationships were
expressed by parents, health care providers, and hospitalized children as key
factors that facilitated positive communication experiences during critical ill-
ness (Haines, 2005; Meert, Eggly, et al., 2008). Some parents were function-
ing at different time frames than the clinicians and needed time to adjust to
the critical admission (Dampier et al., 2002); this was evidenced when par-
ents were unable to recall information given to them (Colville et al., 2003;
Hall, 2005). Parents conveyed that information needed to be clear, consistent,
and in many cases, repeated (Haines, 2005; Noyes, 1999).
Subsequently, parental satisfaction with care received by PICU health care
professionals was varied and had a synergistic relationship with communication,
information, and relationships with the health care providers. Parents reported
positive experiences with care in 8 of the 30 studies when staff were honest,
empathetic, caring, engaged, and showed respect for personal humane traits
(Harbaugh et al., 2004; Meert et al., 2009; Meyer et al., 2006), whereas negative
experiences were reported in 4 of the 30 studies when parents perceived staff as
authoritarian, detached, ignorant, or had a paternalistic approach that added to
their suffering (Noyes, 2000b, 2002; O’Haire & Blackford, 2005).
Parental needs reported in 4 of the 30 studies included basic hygiene facil-
ities; Nutrition; financial assistance; professional, personal, and social sup-
port; information; proximity; access; and the need to resume normal life
activities such as work and home duties (Diaz-Caneja et al., 2005; Noyes,
1999; Tomlinson et al., 1999). Additional needs reported in 3 of the 30 stud-
ies by bereaved parents and chaplains included space, privacy, religious/
spiritual support and a need to control sensory stimuli such as lighting, noise,
odor, temperature, and flow of support personnel (Meert et al., 2009;

Robinson et al., 2006; Sharman et al., 2005). Parents’ desires, needs, and
degree of participation in the nontechnical care of the child varied and were
dependent on many factors. For some parents, this input was vital to maintain
the parental role, to keep present, busy, and connected to the child, whereas
other parents were psychologically or physically unable to participate and
valued the health care providers who carried out this surrogate parental role
as illustrated in 5 of the 30 studies (Harbaugh et al., 2004; Meiers &
Tomlinson, 2003; Meyer et al., 2006).
This review highlighted that the debate continues over parental presence
during resuscitation, emergency transfers, and medical procedures, which
was referenced in 4 of the 30 studies in this review. The existing literature has
identified other factors central to the debate about parental presence, which
include the health care providers’ FCC philosophy, child’s acuity, safety,
focus being efficiency versus parent–child orientated, and the health care
providers’ ability and resources to provide psychosocial emotional support to
parents (Colville et al., 2003; Diaz-Caneja et al., 2005; Jarvis, 1998). The
majority of parents reported decreased satisfaction in 8 of the 30 studies with
separation from their child, which correlated with parents feeling disempow-
ered by losing their parental role as the nurturer and protector (Haines, 2005;
Meert et al., 2005; Noyes, 1999). In the Jarvis (1998) study, the health care
providers’ perceptions of advantages outweighed the disadvantages for
parental presence during resuscitation and this finding is in line with the cur-
rent international guidelines for resuscitation and parental rights.
The experiences and needs of the hospitalized child were varied and may
have been influenced by the age of the child, illness severity, medications,
intubation, level of consciousness, prognosis, length of stay, or available sup-
port. For example, in the Karande et al. (2005) study conducted in India
where resources and medication were limited, all of the children (n = 50)
could recall the PICU, whereas studies conducted in developed countries
who care for ventilator-dependent children had children who had minimal
PICU memory recall (Carnevale, 1999; Playfor et al., 2000). Young ventila-
tor-dependent children in England reported neglect with access to civil rights
and freedom of speech for education, advocacy, treatment information, reha-
bilitation, and social activities (Noyes, 2000a, 2000b). The child’s satisfac-
tion and memory of PICU care also appeared to be influenced by information,
communication, and relationships formed with staff.
Parental acceptance of beneficent medical paternalism for treatment deci-
sions in comparison to decisional authority was influenced by parents being
adequately informed (Carnevale et al., 2006, 2007). However, 7 of the 14
Quebec parents in the Carnevale et al. (2007) study who had decisional
authority on treatment decisions reported a decreased satisfaction with com-
munication and staff relations than the French parents in the Carnevale et al.

Foster et al. 457
(2006) study. This parental satisfaction of care and division of decisional

authority may have been influenced by French physicians maintaining conti-
nuity and responsibility for the child’s care, whereas Quebec physicians
rotate patients weekly. Therefore the degree of parental satisfaction with
communication, information, relationships, and treatment decisions may
inversely be related to the way staff and parents respect, listen, communicate,
and show practical and psychosocial emotional support over this time.
The degree of psychological distress for parents in this review varied; yet
for the most part, and when compared to ward patients, was high and experi-
enced as shock, grief, avoidance behaviors, and posttraumatic stress disor-
ders (PTSD; Diaz-Caneja et al., 2005; Haines, 2005; Hall, 2005). This distress
can affect the whole child-parent-family dynamics where impaired commu-
nication, guilt, blame, conflict, and marital disharmony can add to an already
stressful event (Haines, 2005). The fear of death or impending death of a
child in PICU was recounted by grandparents and parents in 4 of the 30 stud-
ies as living in a constant state of fear, hope, and hopelessness (Bousso &
Angelo, 2003; Hall, 2004a, 2004b, 2005). Family support was highlighted in
the Hall (2004a, 2004b) studies where grandparents had a double concern of
supporting their child and grandchild. This showed that in some PICUs, fam-
ily-oriented practice was open to include all family members, as the child,
parent, and family were seen as a relational whole working together. The
philosophy of the family being a whole is mentioned in the literature
(Anderson & Tomlinson, 1992; Carnevale, 1999; Hall, 2002).
Time directs and influences the state of the science, which in turn is influ-
enced by contextual variables such as population, technology, prognoses,
mortality, morbidity, resources, and the culture of the country, health care
system, and unit where these studies were conducted. The state of the science
needs to evolve as these variables synergistically interconnect where knowl-
edge is built on prior research, which reflects the state of the science at that
time. This was illustrated in this review as the 5 studies conducted from the
year 1998 to 2000 recruited participants from 1 hospital and sample sizes
ranged in number from 7 to 56 (mean = 24.4), where seven different data col-
lection methods were used and 3 of the 5 studies used a framework to under-
pin their study. However, the 10 studies conducted from the year 2000 to
2005 recruited participants from 1 to 7 hospitals and sample sizes ranged in
number from 9 to 233 (mean = 42.2), where 10 different data collection meth-
ods were used and 6 of the 10 studies used one or more than one framework
to direct their research. Of interest during the 2000 to 2005 year bracket,
theoretical sampling, varied analytical designs, perceptions from children,
physicians, and family–nurse dyads were explored that included a wider
scope of data collection methods and analyses such as talk and draw, play,
and the use of genograms.

Furthermore, the 15 studies conducted from the year 2005 to 2011 recruited
participants from 1 to 6 hospitals and sample sizes ranged in number from 7
to 110 (mean = 31.5), where 11 different data collection methods were used
and 5 of the 15 studies used one or more than one framework to direct their
research. During the 2005 to 2011 year time frame, there was an increase in
participant representiveness for fathers, families recruited as complete units,
and child–parent dyads. The studies included a varied range of designs, anal-
yses, multiphase studies, new areas of inquiry, and 2 of the 15 studies included
more than one analyses and publication where the knowledge, limitations,
and recommendations from prior research were being built on to advance the
state of the science.
Implications for Nursing Practice

The majority (N = 24) of the articles in this review recommended ongoing
research into specific areas of PICU critical care. This included the experi-
ences of bereaved children (Haines, 2005; Meert, Briller, et al., 2008); par-
ent–child dyads (Board, 2005); children with communication impairments
(Noyes, 2000b); grandmothers and grandfathers (Hall, 2004a, 2004b); paren-
tal separation (Noyes et al., 1999); parents as PICU architects (Meert, Briller,
et al., 2008); family–nurse interactions (Meiers & Tomlinson, 2003); treat-
ment decisions (Carnevale et al., 2007); and children at different ages, gen-
der, acuity, socioeconomic status, memory recall, and psychological outcomes
(Hall, 2005; Karande et al., 2005). Further recommendations included the
integration of existing research into intervention studies for coping strategies,
counseling, and written information preadmission PICU visits (Haines &
Childs, 2005), maintenance of family integrity (Tomlinson et al., 1999), and
to monitor if the services for ventilator-dependent children are effective
(Noyes, 2000b, 2002; Noyes et al., 1999). Ongoing education, workshops,
and clinical follow-up for health care providers were recommended to
enhance communication skills with trainee doctors and nurses (Bartel et al.,
2000; Harbaugh et al., 2004) and to promote a multidisciplinary approach to
care (Carnevale, 1999; Haines, 2005; Haines & Childs, 2005). Short- and
long-term interventions and goals included architecturally designed units
(Bartel et al., 2000); integration of the whole family where “family policy”
replaces “visitors’ policy” (Carnevale, 1999); discharge plans where children
and parents are deintensified prior to transfer (Diaz-Caneja et al., 2005;
Haines & Childs, 2005); and regular follow-up with parental stress being
monitored after discharge (Colville et al., 2009; Haines, 2005).
All of these recommendations are valid and fundamental to understand
what FCC concepts mean for health care providers, parents, family

Foster et al. 459
caregivers, and hospitalized children within a pediatric critical care setting.

The synergistic relationship between theory, research, education, and clinical
practice is critical to inform and direct current evidence-based child and fam-
ily health care practice that policy makers, organizations, and practitioners
need to integrate into every PICU culture. It will be interesting to compare
the results of this review with a systematic review of quantitative research
reports focused on FCC concepts within a pediatric critical care setting to
explore if any similarities, differences, or relationships exist between the
results that have been conducted under two different paradigms.
Limitations and Strengths

The limitations inherent to variant degrees within the 30 studies included
limited generalizability (n = 13); dominant female and nuclear White English
literate family participant presence (n = 5); convenience sampling with small
sample sizes (n = 10); potential selection bias (n = 3); low response rate (n =
2); varied data collection methods with varied length of follow-up (n = 7);
absence of siblings’ viewpoints (n = 2); limited whole family participation
(n = 3); and an imbalance of the number of articles that focused on each of the
different viewpoints (n = 1). Despite these limitations, all the studies were
thorough and added to the body of knowledge on FCC concepts within a
pediatric critical care setting.
Alternatively, the strengths evident within the 30 individual studies
included long-term engagement with the data (n = 1); findings that validate
prior research and sequentially direct further inquiry (n = 3); large sample
sizes (n = 1); varied data collection methods (n = 4); and the inquiry or map-
ping of unfamiliar terrain (n = 6). The research design used in this metasyn-
thesis did uncover the relevant literature on FCC in PICUs to build on
previous literature reviews, however, the strict inclusion criteria and scoring
system did preclude the inclusion of many studies. While the searches were
exhaustive, it is possible that some research was missed, especially the
unpublished and nonelectronically accessible studies.
Conclusion
This review synthesized the results of 30 qualitative primary studies on FCC
concepts within a pediatric critical care setting from 1998 to 2011 with the
aim of gaining a more comprehensible understanding of this concept from a
wider data pool, which one cannot gain from reviewing individual studies.
The goal was to facilitate decision making about FCC practice, guidelines,
knowledge gaps, and future research by increasing the generalizability of
the pooled findings. This review also presented the individual study

characteristics in chronological order, which showed how the studies’ designs,

samples, data collection methods, and theoretical frameworks have evolved
over time to advance the state of the science.
It was evident in this review that the individual PICU cultures at a macro
and micro level helped create and reinforce the context of parental needs and
satisfaction and how communication, information, and relationships were
interconnecting factors that helped maintain this PICU experience for the
parent, hospitalized child, or health care provider. Communication, informa-
tion, and relationships worked in synergy to help shape and facilitate the
PICU journey for parents, hospitalized children, and health care providers.
For the purposes of research these factors can be separated out; yet, in clinical
practice; these concepts do not stand alone and are inexplicably interwoven
and reliant on each other to work effectively.
Future research into FCC concepts from a health care provider, parent, and
hospitalized child’s perspective needs to explore the similarities and differ-
ences of how family–nurse interactions and relationships shape positive and
negative pediatric critical health care experiences from different countries,
contexts, and health care settings. This metasynthesis adds to the body of
knowledge about PICU FCC concepts from health care providers, parents,
and hospitalized children and highlights that a child’s PICU stay is inevitably
a journey that impacts the entire family.
Appendix A
Search Strategy Through OVID MEDLINE From 1998 to 2011
1. (TX Parent$ or Mother$ or Father$).mp. (n = 78,375)
2. TX FaMIL$.mp. (n = 3)
3. exp parents/ or exp fathers/ or exp mothers/ or exp single parent/ or
exp surrogate mothers/ or exp siblings/ or exp spouses/ or exp single-
parent family/ or exp child (n = 602,008)
4. exp family/ (n = 103,581)
5. or/1-4 (n = 689,586)
6. (parent$ or mother$ or father$ or famil$ or nurs$ or family cent$ or
liv$ in or partic$ in$).ti. (n = 192,105)
7. (family cent$ or liv$ in or room$ in or particip$).tw. (n = 389,256)
8. or/5-6 (n = 822,850)
9. exp Health Personnel/ (n = 166,533)
10. exp nurses/ or exp nursing staff/ (n = 58,561)
11. exp professional-Family Relations/ or exp professional-patient rela-
tions/ (n = 59,201)

Foster et al. 461
12. exp family health (n = 14,116)

13. or/9-12 (n = 227,157)
14. or/ 1-13 (n = 1,278,840)
15. (TX PICU or NICU or SICU or PHDU).mp. (n = 3,077)
16. exp Intensive care units, Pediatric/ or exp Critical Care/ or exp
Intensive care units, Neonatal/ (n = 30,421)
17. (HDU or NICU or PICU).tw. (n = 3,966)
18. (intensive care$ or critical care$ or special care$ or pediat$ intensive
care$ or neonat$ intensive care$ or family$ cent$ care).ti. (n = 16,938)
19. (intensive care$ or critical care$ or special care$ or pediat$ intensive
care$ or neonat$ intensive care$ or family$ cent$ care).tw. (n =
55,208)
20. exp intensive care units/ (n = 27,021)
21. or/ 15-20 (n = 74,016)
22. 21 and 14 (n = 20,610)
23. (TX Hospitali$ or Inpatient$).mp. (n = 35,763)
24. exp Hospitalization/ (n = 78,764)
25. or/23-24 (n = 104,348)
26. 25 and 22 (n = 2,963)
27. limit 26 to (English language and yr=“1998-2011”) (n = 2,518)
Appendix B
JBI Critical Appraisal Checklist for Interpretive and Critical
Research: Number of Yes, No, Responses for the 30 Studies
Criteria Yes No Unclear
1. There is congruity between the stated 30/30 0 1/30
philosophical perspective and the research
methodology.
2. There is congruity between the research 29/30 0 1/30
methodology and the research question or
objectives.
3. There is congruity between the research 30/30 0 0
methodology and the methods used to collect
data.
4. There is congruity between the research 29/30 1/30 0
methodology and the representation and
analysis of data.
5. There is congruity between the research 30/30 0 0
methodology and the interpretation of results.
(continued)

Appendix B (continued)
Criteria Yes No Unclear
6. There is a statement locating the researcher 28/30 2/30 0
culturally or theoretically.
7. The influence of the researcher on the research, 20/30 10/30 0
and vice versa, is addressed.
8. Participants, and their voices, are adequately 29/30 1/30 0
represented.
9. The research is ethical according to current 26/30 4/30 0
criteria or, for recent studies, there is evidence
of ethical approval by an appropriate body.
10. Conclusions drawn in the research report 28/30 2/30 0
do appear to flow from the analysis, or
interpretation, of the data.
Note. yes = 1, no = 0, score range from 0 to 10.
Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research,
authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publi-
cation of this article.
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Author Biographies
Mandie Jane Foster, PG Dip, PG Cert, RN, is a doctoral candidate, Centre for
Postgraduate Nursing Studies, University of Otago, New Zealand, and a registered
nurse within pediatrics at Christchurch Hospital. Her research and clinical interests
focus on family-centered care, spirituality and parental needs, evidence-based clinical
practice, and family nursing. Selected relevant publications include, “The Treatment
of Neonatal Seizures: A Critical Review of the Evidence” in Neonatal, Paediatric and
Child Health Nursing (2007, with P. Lewis), “Parents’ and Health Professionals’
Perceptions of Family Centred Care for Children in Hospital, in Developed and
Developing Countries: A Review of the Literature” in International Journal of
Nursing Studies (2010, with L. Whitehead & P. Maybee).
Lisa Whitehead, PhD, RN, is the director and senior lecturer, Centre for Postgraduate
Nursing Studies, University of Otago, New Zealand. Her research and clinical inter-
ests include graduate student supervision, mentorship, professional practice, family-
centered care, diabetes, oncology, and systematic reviews. Selected recent publica-
tions include, “Feeling Out of Control: A Qualitative Analysis of the Impact of
Bipolar Disorder” in Journal of Psychiatric and Mental Health Nursing (2012, with
M. Crowe, M. Inder, D. Carlyle, L. Wilson, A. Panckhurst, . . . , P. Joyce), “Nurse-Led
Delivery of Specialist Supportive Care for Bipolar Disorder: A Randomized
Controlled Trial” in Journal of Psychiatric and Mental Health Nursing (2012, with
M. Crowe, M. Inder, D. Carlyle, L. Wilson, A. Panckhurst, . . . , P. Joyce), “Using the
Experiences of People With Familial Hypercholesterolaemia to Help Reduce the Risk
of Cardiovascular Disease: A Qualitative Systematic Review” in Journal of Advanced
Nursing (with L. Muir & P. George).
Patricia Maybee, EdD, FAANP, PhD, RN, is a senior lecturer, family nursing prac-
titioner, and graduate student supervisor, Centre for Postgraduate Nursing Studies,
University of Otago, New Zealand. Her research focuses on education, primary health
care, pharmacology, diabetes, and rural nursing. Select recent publications include,
“The Challenges of Managing and Treating Guillain-Barre Syndrome During the
Acute Phase” in Dimensions of Critical Care Nursing (2006, with S. Atkinson &
R. Carr), “Preventing type 2 Diabetes After Gestational Diabetes” in The Diabetes
Educator (2006, with J. Case, D. Willoughby, & V. Haley-Zitlin), “Rural and Urban
Physicians’ Perceptions Regarding the Role and Practice of the Nurse Practitioner,
Physician Assistant, and Certified Nurse Midwife” in Journal of Rural Health (2003,
with S. Burgess, R. Pruitt, A. Metz, & J. Leuner).
Victoria Cullens, MSN, RN, is a clinical nurse specialist, coordinator, nurse educa-
tor, registered nurse, and midwife specializing in pediatric care at Christchurch
Hospital, New Zealand. Her research and clinical interests focus on education, proto-
cols, policies, neonatology, pediatric critical care, and evidence-based clinical prac-
tice. Recent publications include, “Drug Prescribing in Childhood Obesity: A Case
Study Conundrum” in Neonatal, Paediatric and Child Health Nursing (2009, with
L. King & L. McDermott).

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496317

Mandie Jane Foster, PG Dip, PG Cert, RN1,2,

1University of Otago, Christchurch, New Zealand

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systematic review of the literature. Thirty original research articles focusing

From countries to local hospitals around the world, family-centered care

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Data Extraction and Synthesis

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Table 1. Family-Centered Care Clusters.

Cluster Subelement Concept

Table 2. Family-Centered Care Rating Scale.

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Table 3. Characteristics of Synthesis.

Syntheses (findings, Themes (findings,

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Inial search strategy generated results(2518)

Potenally relevant studies idenfied (n=291)

Further studies idenfied from the reference list (n=4)

Data extracon and consensus

Unable to extract PICU data (n=22)

FCC score < 32 (n=70)

Not primary research (n=151)

Figure 1. Flowchart for selection of studies.

included Prehospital, Entry into the Hospital, Journeying Through Unknown

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frustration), 5 codes, 8 findings, and was represented in 4 of the 30 studies.

Entry Into the Hospital

Changing priorities. This theme contained 4 categories (including crisis, work,

Everyday life pressures. This theme contained 3 categories (housework, meals,

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Journeying Through Unknown Waters

Suffering. This theme contained four categories (separation, grandparents

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Parental coping strategies. This theme contained 5 categories (vigilance, pres-

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reported by 1 mother in the Noyes (1999) study; avoidance behaviors shown

Time to engage. This theme contained 1 category identified as different time

Child’s experience. This theme contained 1 category identified as child’s

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previously died. The good experiences included people, medical treatment,

Knowledge. This theme contained 1 category identified as advice, 31 find-

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Parental decision making. This theme contained 5 categories (parents’ deci-

Communication. This theme contained 2 categories identified as dominant

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based on the physician’s body language.

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Family interrelationships. This theme contained 3 categories identified as fam-

Health care provider interrelationships. This theme contained 2 categories iden-

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study. Health care provider coping strategies included humor as reported by

The Hospital Environment

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The Possibility of Death

Religion and Spirituality

Inial search strategy generated results(2518)

Potenally relevant studies idenfied (n=291)

Further studies idenfied from the reference list (n=4)

Data extracon and consensus