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Review Article| Volume 31, ISSUE 3, P330-341, May 2016

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Models of Care Delivery for Families of Critically Ill Children: An Integrative Review of International Literature

  • Kate Curtis, PhD
    Kate Curtis
      Affiliations
      Sydney Nursing School, The University of Sydney, Sydney, Australia

      St George Clinical School, Faculty of Medicine, University of New South Wales, Sydney, Australia
      Search for articles by this author
    • Kim Foster, PhD
      Kim Foster
        Affiliations
        Sydney Nursing School, The University of Sydney, Sydney, Australia

        Faculty of Health, University of Canberra, Canberra, Australia
        Search for articles by this author
      • Rebecca Mitchell, PhD
        Rebecca Mitchell
          Affiliations
          Australian Institute of Health Innovation, Faculty of Medicine and Health Sciences, Macquarie University, Sydney, Australia
          Search for articles by this author
        • Connie Van, PhD
          Connie Van
          Correspondence
          Corresponding author: Connie Van, PhD.
          Contact
          Affiliations
          Sydney Nursing School, The University of Sydney, Sydney, Australia
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        Open AccessPublished:December 14, 2015DOI:https://doi.org/10.1016/j.pedn.2015.11.009
        Models of Care Delivery for Families of Critically Ill Children: An Integrative Review of International Literature
        Previous ArticleLow-Income Children, Adolescents, and Caregivers Facing Respiratory Problems: Support Needs and Preferences
        Next ArticleParents' Perceived Satisfaction of Care, Communication and Environment of the Pediatric Intensive Care Units at a Tertiary Children's Hospital
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            Highlights

            • •
              Nurses are integral for the successful implementation of models of care into clinical practice.
            • •
              Models of care applying family-centred care principles can create positive changes.
            • •
              These models are associated with reduced parental anxiety and improved communication.
            • •
              However, models which provide continuity for the child and family across the span of care are required.
            • •
              There is a need to describe how to design, implement and sustain such models.

            Problem

            Critical illness in children is a life changing event for the child, their parents, caregivers and wider family. There is a need to design and evaluate models of care that aim to implement family-centred care to support more positive outcomes for critically ill children and their families. Due to a gap in knowledge on the impact of such models, the present review was conducted.

            Eligibility criteria

            Primary research articles written in English that focused on children hospitalised for an acute, unexpected, sudden critical illness, such as that requiring an intensive care admission; and addressed the implementation of a model of care in a paediatric acute care hospital setting.

            Sample

            Thirteen studies met the inclusion criteria.

            Results

            The models of care implemented were associated with positive changes such as reduced parental anxiety and improved communication between parents/caregivers and health professionals. However, no model provided intervention throughout each phase of care to (or post) hospital discharge.

            Conclusions

            Models of care applying family-centred care principles targeting critically ill children and their families can create positive changes in care delivery for the family. However a model which provides continuity across the span of care is required.

            Implications

            There is need to describe how best to design, implement and sustain models of care for critically ill children and their families. The success of any intervention implementation will be dependent on the comprehensiveness of the strategy for implementation, the relevance to the context and setting, and engagement with key stakeholders.

            Key words

            • Pediatric
            • Interventions
            • Models
            • Family-centred care
            • Families
            • Parents

            Background

            Critical illness in children is a life changing event for the child, their parents, caregivers and wider family. Medical advances, such as the increasing availability and capacity of mechanical and artificial organ support systems, have resulted in increasing numbers of paediatric intensive care unit admissions and children surviving critical illnesses such as serious physical injury, cardiorespiratory disease and sepsis (
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            After the initial crisis passes, parents must come to terms with the longer term implications of their child's illness and their care needs. During this time, parents experience emotions ranging from sadness and loneliness to feelings of shock, grief, guilt and helplessness (
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            The impact of severe respiratory syncytial virus on the child, caregiver, and family during hospitalization and recovery.
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            ). Around 10–30% of parents/caregivers of seriously injured children develop post-traumatic stress disorder (PTSD) after their child's injury (
            Daviss et al., 2000
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            • Mooney D.
            • Racusin R.
            • Ford J.D.
            • Fleischer A.
            • McHugo G.J.
            Predicting posttraumatic stress after hospitalization for pediatric injury.
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            The impact of caregiver distress on the longitudinal development of child acute post-traumatic stress disorder symptoms in pediatric injury victims.
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            • Jenkins T.L.
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            • Frankel L.R.
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            Carnevale, 1999
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            • Ryan-Wenger N.
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            ). It is also true that models of care implemented in one hospital setting may not be automatically transferable to another hospital due to contextual differences in setting, processes and management. The present review was conducted to examine paediatric models of care delivery that have been applied and evaluated for critically ill children and their families.

            Aim

            The aim of this paper is to examine the impact of models of care that have been implemented for families of critically ill children, to extend understandings of, and inform future care delivery for, this group. Specifically, the review sought to describe:
            • 1.
              The models of care for families of critically ill children have been evaluated
            • 2.
              The outcomes of models of care that have been implemented for families of critically ill children.

            Methods

            An integrative review method was conducted. This method is inclusive of a broad range of literature, including empirical and non-empirical work. The integrative review method employs a systematic approach to searching for, reviewing, extracting and analysing literature, using the stages of problem identification, literature searching, and data evaluation, analysis, and presentation (
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            ). For the purpose of review, a model of care includes a framework for practice for patient care delivery through the application of a set of service principles across identified clinical streams such as paediatric illness and patient flow continuums (
            Wilson et al., 2009
            • Wilson H.
            • Huntington A.
            • Commission F.
            An exploration of the family partnership model in New Zealand.
            Families Commission, Wellington, New Zealand2009
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            ).
            A search of the literature using electronic databases and key word search terms and combinations was used to locate articles relating to models of care delivery for critically ill children and their families. The search terms focused on treatment setting, care provider and models of care. Search terms such as ‘pediatric’, ‘hospital’, ‘parent’, ‘family’, ‘family-centered care’, ‘care coordination’, ‘case management’ and ‘partnership’ were used. The CINAHL, MEDLINE and PsycInfo electronic databases were systematically searched for abstracts for all available years until June 2015 (CINAHL from 1982, MEDLINE from 1946, PsychInfo from 1860). A hand search of the full text articles obtained was also conducted. Inclusion criteria included primary research articles (defined as articles that report on a new set of findings from original research), written in English. Articles were included if they focused on children hospitalised for an acute, unexpected, sudden critical illness, such as that requiring an intensive care admission; and addressed the implementation of a model of care in a paediatric acute care hospital setting. The model of care needed to be an intervention focused on improving the care for families of children who were critically ill, such as FCC, shared care, or partnered care. Although the majority of studies represent the ‘family’ as consisting of parents and the ill child, some studies also included non-parent caregivers and other family members. In recognition that family structures are increasingly heterogeneous (
            Shudy et al., 2006
            • Shudy M.
            • de Almeida M.L.
            • Ly S.
            • Landon C.
            • Groft S.
            • Jenkins T.L.
            • Nicholson C.E.
            Impact of pediatric critical illness and injury on families: A systematic literature review.
            Pediatrics. 2006; 118: S203-S218https://doi.org/10.1542/peds.2006-0951B
            • Crossref
            • PubMed
            • Scopus (210)
            • Google Scholar
            ), we did not exclude any particular ‘type’ of family. Articles were excluded if they included the following cohorts: adult hospitalisations, mental illnesses, home care not associated with children, newborn or preterm babies, obstetrics, parental roles or training, family community support, day surgery, neonates, death of child, chronic illnesses, developmental disability, and disabilities from birth.
            A two-step screening process was used to obtain the articles for review. The initial search generated 3296 records (see Figure 1). Preliminary screening of titles and abstracts against the inclusion/exclusion criteria were performed by two authors (KC and KF), resulting in 334 abstracts (including duplicates removed). Full texts of retained records were read, reference lists hand searched and secondary screening conducted. Thirteen papers were included for review. The constant comparison method was used to systematically extract and analyse data (
            Patton, 2015
            • Patton M.Q.
            Qualitative research & evaluation methods: Integrating theory and practice.
            4th ed. Sage Publications, Thousand Oaks, CA2015
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            ). Data relevant to the research question were extracted from each study and entered into a matrix. Data were then compared and contrasted within and across studies in an iterative process until consensus between the authors on final categories was reached. In the final step, results from the analysis were then synthesised into an integrated summary (
            Whittemore and Knafl, 2005
            • Whittemore R.
            • Knafl K.
            The integrative review: Updated methodology.
            Journal of Advanced Nursing. 2005; 52: 546-553
            • Crossref
            • PubMed
            • Scopus (4024)
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            ).
            Figure thumbnail gr1
            Figure 1Search and screening.
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            Results

            The review included thirteen published studies evaluating models of care delivery from 1988 to 2015 in Australia, Ireland, Thailand and the United States. They comprised randomised controlled trial (n = 2), quasi-experimental (n = 3), prospective cohort (n = 1), pre/post evaluation (n = 1), cross-sectional survey (n = 1), mixed method (n = 1), ethnographic (n = 1) and qualitative (n = 3) design studies. Two studies included non-English speaking parents (
            Seltz et al., 2011
            • Seltz L.B.
            • Zimmer L.
            • Ochoa-Nunez L.
            • Rustici M.
            • Bryant L.
            • Fox D.
            Latino families' experiences with family-centered rounds at an academic children's hospital.
            Academic Pediatrics. 2011; 11: 432-438https://doi.org/10.1016/j.acap.2011.06.002
            • Abstract
            • Full Text
            • Full Text PDF
            • PubMed
            • Scopus (44)
            • Google Scholar
            ,
            Walker-Vischer et al., 2015
            • Walker-Vischer L.
            • Hill C.
            • Mendez S.S.
            The experience of Latino parents of hospitalized children during family-centered rounds.
            Journal of Nursing Administration. 2015; 45: 152-157https://doi.org/10.1097/nna.0000000000000175
            • Crossref
            • PubMed
            • Google Scholar
            ). The contexts of care included a: tertiary medical centre (n = 1), acute care referral centre (n = 1), regional general hospital (n = 1), trauma centre (n = 1), teaching hospital (n = 2), paediatric hospital (n = 6) and other general hospitals (n = 1). The impact of the models of care was evaluated on different stakeholders; mothers (2/13), parents (7/13), families (3/13), and nurses (3/13). Sample size varied from 18 to 144. Most studies that implemented a model of care included some form of education or training for the nurses before or during the course of implementation.

            Models and Approaches of Care and Outcomes for Families of Critically ill Children

            The models of care included in this review were based on various theories and approaches including: Lazarus Stress & Coping, Nursing Mutual Participation Model of Care (NMPMC), Partnership Model of Care, FCC, Shared Care, Family-Centered Rounds (FCR), Negotiated Care Tool, Creating Opportunities for Parent Empowerment (COPE), and Patient and Family-Centered Care (PFCC). Each model was implemented for a specific phase of care in hospitalisation, especially transitioning from the PICU to the ward. No model of care was identified that provided intervention throughout each phase of care to (or post) hospital discharge. Table 1 provides an overview of the range of methods for models of care implementation, for example providing written information on what to parents should expect post PICU discharge. Each model involved parents/family members in different ways (Table 2) and all models had the same intent — to improve paediatric patient care delivery. The majority of studies focused on parents.
            Table 1Overview of studies evaluating models of care for critically ill children and their families.
            Author, year, countryStudy designParticipants, sample sizeStudy aimModelOverview of modelOutcome
            Bouve et al., 1999
            • Bouve L.R.
            • Rozmus C.L.
            • Giordano P.
            Preparing parents for their child's transfer from the PICU to the pediatric floor.
            Applied Nursing Research. 1999; 12: 114-120
            • Abstract
            • Full Text PDF
            • PubMed
            • Scopus (48)
            • Google Scholar
            , United States
            Randomised control trialParents.

            n = 31 in experimental group and n = 19 in control group
            Examine a nursing intervention intended to diminish the anxiety level of parents of children being transferred from a Paediatric Intensive Care Unit (PICU) to a wardLazarus Stress & CopingInformation sheet and verbal explanation provided to parents to reduce anxiety when child transferred from PICU to wardEffective transfer preparation significantly reduces anxiety experienced by parents facing the imminent transfer of their child out of PICU
            Curley, 1988
            • Curley M.A.
            Effects of the nursing mutual participation model of care on parental stress in the pediatric intensive care unit.
            Heart & Lung. 1988; 17: 682-688
            • PubMed
            • Google Scholar
            , United States
            Quasi-experimentalParents.

            n = 16 in experimental group and n = 17 in control group
            Determine effects of care model on perceived environmental stress of parentNursing mutual participation model of care (NMPMC)Nurse negotiation with parent to foster active parental involvement in the care of their ill childThe NMPMC is helpful in alleviating parental stress, specifically the stress related to interruption in the parent-child relationship
            Hughes, 2007
            • Hughes M.
            Parents' and nurses' attitudes to family‐centred care: An Irish perspective.
            Journal of Clinical Nursing. 2007; 16: 2341-2348
            • Crossref
            • PubMed
            • Scopus (27)
            • Google Scholar
            , Ireland
            Cross-sectional surveyParents and nurses.

            n = 100 parents and n = 44 nurses
            Examine the attitudes of parents and nurses to the model of care delivery on an in-patient children's unitPartnership model of care/family-centred care (FCC)Involving parents as partners in care via an open-visiting policy allowing parents to stay with their child on the unit overnightBoth parents and nurses viewed FCC as appropriate, however there were differences between what parents and nurses saw as their roles
            Keatinge and Gilmore, 1996
            • Keatinge D.
            • Gilmore V.
            Shared care: A partnership between parents and nurses.
            Australian Journal of Advanced Nursing. 1996; 14: 28-36
            • PubMed
            • Google Scholar
            , Australia
            Pre/post evaluationParents and nurses.

            n = 39 parents and n = 20 nurses
            Evaluate the implementation of shared care in a paediatric unitShared CareIncreased engagement with parents and shared bedside documentation for planning, negotiation, sharing of responsibilities and education of child's illnessImplementation of shared care was associated with a reduction in the anxiety levels of most parents who participated in shared care
            Kuntaros et al., 2007
            • Kuntaros S.
            • Wichiencharoen K.
            • Prasopkittikun T.
            • Staworn D.
            Effects of family-centered care on self-efficacy in participatory Involvement in Child Care and Satisfaction of Mothers in PICU.
            Thai Journal of Nursing Research. 2007; 11: 203-213
            • Google Scholar
            , Thailand
            Quasi-experimentalMothers.

            n = 16 in experimental group and n = 17 in control group
            Examine the effects of FCC on mothers' self-efficacy in participatory involvement in child care and satisfaction with nursing careFCC (using NMPMC)NMPMC implemented (e.g. information regarding treatment provided, parent's expectations assessed, discussion of child's care with clinicians encouraged) to foster parent participation in child's careMothers' self-efficacy in participatory involvement in child care and satisfaction with nursing care in the experimental group were significantly higher than that in the control group
            Kuo et al., 2012
            • Kuo D.Z.
            • Sisterhen L.L.
            • Sigrest T.E.
            • Biazo J.M.
            • Aitken M.E.
            • Smith C.E.
            Family experiences and pediatric health services use associated with family-centered rounds.
            Pediatrics. 2012; 130: 299-305
            • Crossref
            • PubMed
            • Scopus (66)
            • Google Scholar
            , United States
            Prospective cohortFamilies.

            n = 70 families in the family-centred rounds (FCR) team, n = 69 families in the non-FCR teams
            Compare families of children admitted to a general paediatric unit-based ward team with FCR versus 2 teams without formal FCR trainingFCRFamily participation in ward rounds allowing family members to participate in discussions with the team and ask questions about the child's care planFCR are associated with higher parent satisfaction, consistent medical information, and care plan discussion, with no additional burden to health service use
            Latta et al., 2008
            • Latta L.C.
            • Dick R.
            • Parry C.
            • Tamura G.S.
            Parental responses to involvement in rounds on a pediatric inpatient unit at a teaching hospital: A qualitative study.
            Academic Medicine. 2008; 83: 292-297https://doi.org/10.1097/ACM.0b013e3181637e21
            • Crossref
            • PubMed
            • Scopus (77)
            • Google Scholar
            , United States
            QualitativeParents.

            n = 18
            Identify how parents responded to participation in interdisciplinary teaching roundsFCRFamilies included in ward rounds. Nurses prepared parents by: providing information regarding the purpose/structure of the rounds, content for discussion, roles of team members, questions parents may want to askParents' experience of being included on ward rounds was positive. Being able to communicate, understand the plan, and participate in decision making about their child's care were important to parents
            McCann et al., 2008
            • McCann D.
            • Young J.
            • Watson K.
            • Ware R.S.
            • Pitcher A.
            • Bundy R.
            • Greathead D.
            Effectiveness of a tool to improve role negotiation and communication between parents and nurses.
            Paediatric Nursing. 2008; 20: 14-19
            • Crossref
            • PubMed
            • Scopus (8)
            • Google Scholar
            , Australia
            Quasi-experimental pre/post-evaluationNurses.

            n = 69
            Evaluate the effectiveness of a documentary tool designed to formalise role negotiation and improve communication between parents and nursesNegotiated Care ToolNurses negotiated and recorded care plan with parents. Parents given the opportunity to negotiate full or partial responsibility for undertaking care of their child or allow the nurse to assume full responsibilityThe Negotiated Care Tool raised staff awareness of the importance of effective communication and negotiation of care with parents in busy clinical practice areas
            Melnyk et al., 2007
            • Melnyk B.
            • Crean H.
            • Feinstein N.
            • Fairbanks E.
            • Alpert-Gillis L.
            Testing the theoretical framework of the COPE program for mothers of critically ill children: An integrative model of young children's post-hospital adjustment behaviors.
            Journal of Pediatric Psychology. 2007; 32: 463-474
            • Crossref
            • PubMed
            • Scopus (40)
            • Google Scholar
            , United States
            Randomised control trialMothers.

            n = 78 in experimental group and n = 65 in control group
            Test a theoretical model examining processes through which a parent-focused educational behavioural intervention (Creating Opportunities for Parent Empowerment (COPE)) relates to children's post-hospital adjustment problemsCOPEAudiotaped and matched written information provided to parents post discharge followed by a telephone call to increase parents' knowledge and participation in child's emotional and physical care post dischargeCOPE participation was associated with more maternal support for the child, which was associated with less internalising and externalising behaviours 3 months post discharge
            Seltz et al., 2011
            • Seltz L.B.
            • Zimmer L.
            • Ochoa-Nunez L.
            • Rustici M.
            • Bryant L.
            • Fox D.
            Latino families' experiences with family-centered rounds at an academic children's hospital.
            Academic Pediatrics. 2011; 11: 432-438https://doi.org/10.1016/j.acap.2011.06.002
            • Abstract
            • Full Text
            • Full Text PDF
            • PubMed
            • Scopus (44)
            • Google Scholar
            , United States
            QualitativeFamilies

            n = 28
            To characterise Latino families' experiences with family-centred rounds at an academic children's hospital to identify areas for improvementFCRResident physician invites families to participate in rounds; parents are asked whether they prefer the discussion take place at the bedside or outside the patient's room. For Spanish-speaking families, a bilingual provider, if present, would update the family at the conclusion of rounds for the patient.Spanish-speaking Latino families are not consistently receiving optimal family-centred rounds. Different strategies are needed to fully engage and empower Latino families.
            Subramony et al., 2014
            • Subramony A.
            • Hametz P.A.
            • Balmer D.
            Family-centered rounds in theory and practice: An ethnographic case study.
            Academic Pediatrics. 2014; 14: 200-206https://doi.org/10.1016/j.acap.2013.11.003
            • Abstract
            • Full Text
            • Full Text PDF
            • PubMed
            • Scopus (29)
            • Google Scholar
            , United States
            Qualitative ethnographicFamilies.

            n = 140 patients, their families and medical team were observed, n = 6 family members were interviewed
            Understand the alignment between the principles of FCC and FCR in practiceFCRMedical teams: 1) give families a choice to participate in rounds; 2) introduce themselves to family members; 3) form a circle inclusive of the patient and family; 4) verbally invite families to participate in discussion; 5) avoid the use of medical jargonFCR practices may set the stage for FCC but they do not necessarily ensure that the principles of FCC are upheld. Contextual factors may mediate how FCC principles are translated in practice
            Uhl et al., 2013
            • Uhl T.
            • Fisher K.
            • Docherty S.L.
            • Brandon D.H.
            Insights into patient and family-centered care through the hospital experiences of parents.
            Journal of Obstetric, Gynecologic, and Neonatal Nursing. 2013; 42: 121-131https://doi.org/10.1111/1552-6909.12001
            • Abstract
            • Full Text
            • Full Text PDF
            • PubMed
            • Scopus (42)
            • Google Scholar
            , United States
            Mixed-method descriptiveParents.

            n = 9 completed focus group, n = 134 completed surveys
            Describe parents' care experiences during hospitalisation of their children to identify strategies that could improve the provision of patient and family-centred care (PFCC)PFCCTwenty-four hour parental presence and participation during daily medical rounds, changes in the length of physician clinical rotations and assignment of an attending physician of recordPFCC provides the opportunity to ameliorate parental stress however there were both positive and negative experiences in relation to the PFCC concepts of dignity and respect, information sharing, participation in care and collaboration
            Walker-Vischer et al., 2015
            • Walker-Vischer L.
            • Hill C.
            • Mendez S.S.
            The experience of Latino parents of hospitalized children during family-centered rounds.
            Journal of Nursing Administration. 2015; 45: 152-157https://doi.org/10.1097/nna.0000000000000175
            • Crossref
            • PubMed
            • Google Scholar
            , United States
            QualitativeParents.

            n = 20
            Describe the experiences of Latino parents of hospitalised children during FCRFCRFamilies included in ward rounds to promote the exchange of information between parents, the child, and the healthcare team to create and support a partnershipFCR helped parents understand the plan and facilitated communication when done in Spanish. Parents felt their participation and input were valued and that these positively impacted care.
            • Open table in a new tab
            Table 2Parent/family member involvement in studies evaluating models of care for critically ill children and their families.
            Author (year)Parent/family member provided with written informationParent/family member provided with verbal informationParent/family member involved in shared careParent/family member participation in ward roundsParent/family member staying overnight with child
            Bouve et al., 1999
            • Bouve L.R.
            • Rozmus C.L.
            • Giordano P.
            Preparing parents for their child's transfer from the PICU to the pediatric floor.
            Applied Nursing Research. 1999; 12: 114-120
            • Abstract
            • Full Text PDF
            • PubMed
            • Scopus (48)
            • Google Scholar
            ✓✓
            Curley, 1988
            • Curley M.A.
            Effects of the nursing mutual participation model of care on parental stress in the pediatric intensive care unit.
            Heart & Lung. 1988; 17: 682-688
            • PubMed
            • Google Scholar
            ✓
            Hughes, 2007
            • Hughes M.
            Parents' and nurses' attitudes to family‐centred care: An Irish perspective.
            Journal of Clinical Nursing. 2007; 16: 2341-2348
            • Crossref
            • PubMed
            • Scopus (27)
            • Google Scholar
            ✓✓
            Keatinge and Gilmore, 1996
            • Keatinge D.
            • Gilmore V.
            Shared care: A partnership between parents and nurses.
            Australian Journal of Advanced Nursing. 1996; 14: 28-36
            • PubMed
            • Google Scholar
            ✓✓✓
            Kuntaros et al., 2007
            • Kuntaros S.
            • Wichiencharoen K.
            • Prasopkittikun T.
            • Staworn D.
            Effects of family-centered care on self-efficacy in participatory Involvement in Child Care and Satisfaction of Mothers in PICU.
            Thai Journal of Nursing Research. 2007; 11: 203-213
            • Google Scholar
            ✓✓
            Kuo et al., 2012
            • Kuo D.Z.
            • Sisterhen L.L.
            • Sigrest T.E.
            • Biazo J.M.
            • Aitken M.E.
            • Smith C.E.
            Family experiences and pediatric health services use associated with family-centered rounds.
            Pediatrics. 2012; 130: 299-305
            • Crossref
            • PubMed
            • Scopus (66)
            • Google Scholar
            ✓✓
            Latta et al., 2008
            • Latta L.C.
            • Dick R.
            • Parry C.
            • Tamura G.S.
            Parental responses to involvement in rounds on a pediatric inpatient unit at a teaching hospital: A qualitative study.
            Academic Medicine. 2008; 83: 292-297https://doi.org/10.1097/ACM.0b013e3181637e21
            • Crossref
            • PubMed
            • Scopus (77)
            • Google Scholar
            ✓✓
            McCann et al., 2008
            • McCann D.
            • Young J.
            • Watson K.
            • Ware R.S.
            • Pitcher A.
            • Bundy R.
            • Greathead D.
            Effectiveness of a tool to improve role negotiation and communication between parents and nurses.
            Paediatric Nursing. 2008; 20: 14-19
            • Crossref
            • PubMed
            • Scopus (8)
            • Google Scholar
            ✓✓
            Melnyk et al., 2007
            • Melnyk B.
            • Crean H.
            • Feinstein N.
            • Fairbanks E.
            • Alpert-Gillis L.
            Testing the theoretical framework of the COPE program for mothers of critically ill children: An integrative model of young children's post-hospital adjustment behaviors.
            Journal of Pediatric Psychology. 2007; 32: 463-474
            • Crossref
            • PubMed
            • Scopus (40)
            • Google Scholar
            ✓✓✓
            Seltz et al., 2011
            • Seltz L.B.
            • Zimmer L.
            • Ochoa-Nunez L.
            • Rustici M.
            • Bryant L.
            • Fox D.
            Latino families' experiences with family-centered rounds at an academic children's hospital.
            Academic Pediatrics. 2011; 11: 432-438https://doi.org/10.1016/j.acap.2011.06.002
            • Abstract
            • Full Text
            • Full Text PDF
            • PubMed
            • Scopus (44)
            • Google Scholar
            ✓✓
            Subramony et al., 2014
            • Subramony A.
            • Hametz P.A.
            • Balmer D.
            Family-centered rounds in theory and practice: An ethnographic case study.
            Academic Pediatrics. 2014; 14: 200-206https://doi.org/10.1016/j.acap.2013.11.003
            • Abstract
            • Full Text
            • Full Text PDF
            • PubMed
            • Scopus (29)
            • Google Scholar
            ✓✓
            Uhl et al., 2013
            • Uhl T.
            • Fisher K.
            • Docherty S.L.
            • Brandon D.H.
            Insights into patient and family-centered care through the hospital experiences of parents.
            Journal of Obstetric, Gynecologic, and Neonatal Nursing. 2013; 42: 121-131https://doi.org/10.1111/1552-6909.12001
            • Abstract
            • Full Text
            • Full Text PDF
            • PubMed
            • Scopus (42)
            • Google Scholar
            ✓✓
            Walker-Vischer et al., 2015
            • Walker-Vischer L.
            • Hill C.
            • Mendez S.S.
            The experience of Latino parents of hospitalized children during family-centered rounds.
            Journal of Nursing Administration. 2015; 45: 152-157https://doi.org/10.1097/nna.0000000000000175
            • Crossref
            • PubMed
            • Google Scholar
            ✓✓
            ✓ = yes.
            • Open table in a new tab
            The models of care evaluated all had a positive impact on enhancing families' and parents' experience in a paediatric setting. Depending on the focus of the model of care, the most common outcomes were associated with reduction in anxiety levels for parents (
            Bouve et al., 1999
            • Bouve L.R.
            • Rozmus C.L.
            • Giordano P.
            Preparing parents for their child's transfer from the PICU to the pediatric floor.
            Applied Nursing Research. 1999; 12: 114-120
            • Abstract
            • Full Text PDF
            • PubMed
            • Scopus (48)
            • Google Scholar
            ,
            Keatinge and Gilmore, 1996
            • Keatinge D.
            • Gilmore V.
            Shared care: A partnership between parents and nurses.
            Australian Journal of Advanced Nursing. 1996; 14: 28-36
            • PubMed
            • Google Scholar
            ,
            Melnyk et al., 2007
            • Melnyk B.
            • Crean H.
            • Feinstein N.
            • Fairbanks E.
            • Alpert-Gillis L.
            Testing the theoretical framework of the COPE program for mothers of critically ill children: An integrative model of young children's post-hospital adjustment behaviors.
            Journal of Pediatric Psychology. 2007; 32: 463-474
            • Crossref
            • PubMed
            • Scopus (40)
            • Google Scholar
            ), and improved open communication between parents and healthcare professionals (
            Keatinge and Gilmore, 1996
            • Keatinge D.
            • Gilmore V.
            Shared care: A partnership between parents and nurses.
            Australian Journal of Advanced Nursing. 1996; 14: 28-36
            • PubMed
            • Google Scholar
            ,
            Kuo et al., 2012
            • Kuo D.Z.
            • Sisterhen L.L.
            • Sigrest T.E.
            • Biazo J.M.
            • Aitken M.E.
            • Smith C.E.
            Family experiences and pediatric health services use associated with family-centered rounds.
            Pediatrics. 2012; 130: 299-305
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            • PubMed
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            • Google Scholar
            ,
            Landolt et al., 2012
            • Landolt M.A.
            • Ystrom E.
            • Sennhauser F.H.
            • Gnehm H.E.
            • Vollrath M.E.
            The mutual prospective influence of child and parental post-traumatic stress symptoms in pediatric patients.
            Journal of Child Psychology and Psychiatry. 2012; 53: 767-774https://doi.org/10.1111/j.1469-7610.2011.02520.x
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            • Google Scholar
            ,
            Melnyk et al., 2007
            • Melnyk B.
            • Crean H.
            • Feinstein N.
            • Fairbanks E.
            • Alpert-Gillis L.
            Testing the theoretical framework of the COPE program for mothers of critically ill children: An integrative model of young children's post-hospital adjustment behaviors.
            Journal of Pediatric Psychology. 2007; 32: 463-474
            • Crossref
            • PubMed
            • Scopus (40)
            • Google Scholar
            ,
            Subramony et al., 2014
            • Subramony A.
            • Hametz P.A.
            • Balmer D.
            Family-centered rounds in theory and practice: An ethnographic case study.
            Academic Pediatrics. 2014; 14: 200-206https://doi.org/10.1016/j.acap.2013.11.003
            • Abstract
            • Full Text
            • Full Text PDF
            • PubMed
            • Scopus (29)
            • Google Scholar
            ,
            Uhl et al., 2013
            • Uhl T.
            • Fisher K.
            • Docherty S.L.
            • Brandon D.H.
            Insights into patient and family-centered care through the hospital experiences of parents.
            Journal of Obstetric, Gynecologic, and Neonatal Nursing. 2013; 42: 121-131https://doi.org/10.1111/1552-6909.12001
            • Abstract
            • Full Text
            • Full Text PDF
            • PubMed
            • Scopus (42)
            • Google Scholar
            ,
            Walker-Vischer et al., 2015
            • Walker-Vischer L.
            • Hill C.
            • Mendez S.S.
            The experience of Latino parents of hospitalized children during family-centered rounds.
            Journal of Nursing Administration. 2015; 45: 152-157https://doi.org/10.1097/nna.0000000000000175
            • Crossref
            • PubMed
            • Google Scholar
            ). The studies reported few negative outcomes associated with the implementation of a model of care from the parent's perspective. Some parents felt there were occasions where they did not need to be included in the discussion (
            Seltz et al., 2011
            • Seltz L.B.
            • Zimmer L.
            • Ochoa-Nunez L.
            • Rustici M.
            • Bryant L.
            • Fox D.
            Latino families' experiences with family-centered rounds at an academic children's hospital.
            Academic Pediatrics. 2011; 11: 432-438https://doi.org/10.1016/j.acap.2011.06.002
            • Abstract
            • Full Text
            • Full Text PDF
            • PubMed
            • Scopus (44)
            • Google Scholar
            ,
            Uhl et al., 2013
            • Uhl T.
            • Fisher K.
            • Docherty S.L.
            • Brandon D.H.
            Insights into patient and family-centered care through the hospital experiences of parents.
            Journal of Obstetric, Gynecologic, and Neonatal Nursing. 2013; 42: 121-131https://doi.org/10.1111/1552-6909.12001
            • Abstract
            • Full Text
            • Full Text PDF
            • PubMed
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            • Bryant L.
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            ) which limited their understanding of their child's condition. Further, some healthcare professionals found shared care to be a problem, as although some parents agreed to share patient care activities, parents were not capable of performing some of these activities (
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            Reduced Parental Anxiety

            Four studies assessed parents' trait and state anxiety associated with model of care using the state-trait anxiety inventory scale (
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            • Giordano P.
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            ). Trait anxiety reflects stress and feelings of worry that individuals can experience in the general day-to-day whilst state anxiety reflects feelings of nervousness, fear and discomfort that an individual can experience in response to perceived dangerous situations. High trait anxiety was associated with negative parental beliefs and negative moods during hospitalisation.
            Melnyk et al., 2007
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            • Feinstein N.
            • Fairbanks E.
            • Alpert-Gillis L.
            Testing the theoretical framework of the COPE program for mothers of critically ill children: An integrative model of young children's post-hospital adjustment behaviors.
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            , found the Creating Opportunities for Parent Empowerment (COPE) program, which is a parent-focused educational behavioural intervention, supported mothers and prepared them for their time during their hospital stay and resulted in lower trait anxiety, a decrease in negative moods and an increase in confidence in parenting. Similarly
            Bouve et al., 1999
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            • Rozmus C.L.
            • Giordano P.
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            and
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            demonstrated that their parental education, shared care and mutual participation interventions were associated with reduction in parent and family anxiety levels. Parents who were exposed to these models showed a significantly lower trait and state anxiety than parents who had usual care during their child's hospitalisation stay. This reduction in anxiety was attributed to increased parental confidence, engagement and awareness in the care plans for their child (
            Bouve et al., 1999
            • Bouve L.R.
            • Rozmus C.L.
            • Giordano P.
            Preparing parents for their child's transfer from the PICU to the pediatric floor.
            Applied Nursing Research. 1999; 12: 114-120
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            Curley and Wallace, 1992
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            ,
            Keatinge and Gilmore, 1996
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            ).

            Improved Communication Between Parents and Health Professionals

            Parents experienced an increase in open communication with health professionals during the implementation of shared care (
            Keatinge and Gilmore, 1996
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            ) and mutual participation (
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            ) models of care delivery. The models of care, in particular those with shared care and mutual participation frameworks, challenged nurses to encourage parents to ask questions and to allocate time to respond to questions. Parents still, however, experienced difficulty in understanding complex medical terminology when they were included in ward rounds (
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            • Latta L.C.
            • Dick R.
            • Parry C.
            • Tamura G.S.
            Parental responses to involvement in rounds on a pediatric inpatient unit at a teaching hospital: A qualitative study.
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            Journal of Obstetric, Gynecologic, and Neonatal Nursing. 2013; 42: 121-131https://doi.org/10.1111/1552-6909.12001
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            ). In particular, parents preferred any questions they had of health professionals to be answered in lay terminology, where possible.
            Kuo et al., 2012
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            who compared parents involved in FCC rounds to parents who received usual care, found that parents felt by being involved in FCC rounds they had a better understanding of the medical team's perspective of their child's condition. In addition, parents felt that their expectations were met when the rounds team engaged them in decision making and this also reduced misunderstanding between healthcare professionals and parents, although parents did feel uncomfortable if there was conflict between rounding medical staff (
            Uhl et al., 2013
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            • Fisher K.
            • Docherty S.L.
            • Brandon D.H.
            Insights into patient and family-centered care through the hospital experiences of parents.
            Journal of Obstetric, Gynecologic, and Neonatal Nursing. 2013; 42: 121-131https://doi.org/10.1111/1552-6909.12001
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            ) or information was given in front of other family members or the child (
            Seltz et al., 2011
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            • Zimmer L.
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            • Bryant L.
            • Fox D.
            Latino families' experiences with family-centered rounds at an academic children's hospital.
            Academic Pediatrics. 2011; 11: 432-438https://doi.org/10.1016/j.acap.2011.06.002
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            ). Parents who were included in ward rounds felt more comfortable when asked their opinion, permission or in asking questions of health professionals than parents not included in ward rounds. Parents who were included on FCC rounds felt listened to, respected, and treated as an important member of the care team. This ultimately resulted in improved communication between the parent and health professionals (
            Kuo et al., 2012
            • Kuo D.Z.
            • Sisterhen L.L.
            • Sigrest T.E.
            • Biazo J.M.
            • Aitken M.E.
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            Family experiences and pediatric health services use associated with family-centered rounds.
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            Family-centered rounds in theory and practice: An ethnographic case study.
            Academic Pediatrics. 2014; 14: 200-206https://doi.org/10.1016/j.acap.2013.11.003
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            • Full Text
            • Full Text PDF
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            ,
            Uhl et al., 2013
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            • Fisher K.
            • Docherty S.L.
            • Brandon D.H.
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            Journal of Obstetric, Gynecologic, and Neonatal Nursing. 2013; 42: 121-131https://doi.org/10.1111/1552-6909.12001
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            ), particularly when FCC rounds were conducted in the parent's primary language if they had limited English proficiency (
            Seltz et al., 2011
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            • Zimmer L.
            • Ochoa-Nunez L.
            • Rustici M.
            • Bryant L.
            • Fox D.
            Latino families' experiences with family-centered rounds at an academic children's hospital.
            Academic Pediatrics. 2011; 11: 432-438https://doi.org/10.1016/j.acap.2011.06.002
            • Abstract
            • Full Text
            • Full Text PDF
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            ,
            Walker-Vischer et al., 2015
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            • Hill C.
            • Mendez S.S.
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            ).

            Challenges for Implementation

            Although the implementation of the different models of care delivery reviewed was associated with positive experiences for families and parents, only three studies (
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            Kuo et al., 2012
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            • Sisterhen L.L.
            • Sigrest T.E.
            • Biazo J.M.
            • Aitken M.E.
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            ) reported in detail the local implementation of the change in practice. Although referring to implementation considerations, no studies described or evaluated the wider implementation considerations such as gaining organisational support, economic impact or wider workforce administrative implications. Three studies however examined the effects of the model on the nursing staff (
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            ). Nurses felt the models of care that involved shared care between parents, increased their workload and took them away from their other clinical duties that are deemed equally if not more important (
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            ). Nurses also reported assessing parental capabilities and dealing with parents' inability to carry out tasks to be challenging (
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            ). Two studies demonstrated the need for increased training in communication skills for nurses when implementing shared or FCC models.
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            found that there was a lack of confidence from nurses in communicating with parents, and
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            demonstrated that nurses believed they were better at teaching parents new skills than the parents perceived the nurses teaching skills. However, none of the models of care reviewed addressed the child's recovery journey and phases of care from hospital admission through to post-discharge.

            Discussion

            Family-centred care models typically try to ensure that care delivery is planned around the whole family, not only the injured child, and that all family members are recognised as care recipients (
            Jolley and Shields, 2009
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            ). Optimally, FCC of severely injured children should include: ‘parental participation’ which involves parent/carer involvement in care delivery, ‘care-by-parent’ where the parent/carer is onsite, and ‘partnerships-in-care’ where parents/carers work together with healthcare providers in providing care (
            Jolley and Shields, 2009
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            ). The current review identified a relatively small number of studies with small sample sizes that had evaluated different models of care for critically injured children published in the peer-reviewed literature. One of the study designs may have encouraged subjects to alter their behaviour due to the knowledge of being observed (also known as the Hawthorne effect) (Curley, 1988). Other limitations included the exclusion of non-English speakers in all but two studies, which may have resulted in the exclusion of caregivers that needed the most support/assistance. Future research in the use of the FCC should include this group of parents.
            Each model of care only involved one or two aspects of FCC, which ranged from involving the parent in care decision making for their child (four studies), including the parent in ward rounds (six studies), letting a parent undertake some of the care for their child (one study), providing parents with an information sheet and verbal information when their child was transferred from PICU to a paediatric ward (one study), and providing mothers with written information on discharge of their child relating to their physical and emotional care, including a 3-month follow-up (one study). No studies described a holistic FCC model, that is, a model that considered the whole critical illness trajectory for the child and their family.
            This review, however, did identify that models of care applying only one or two aspects of approaches such as FCC, shared care, partnered care and increased caregiver involvement in care provision of critically ill children were associated with reduced parental anxiety, increased parental satisfaction in care provided and improved communication between parents and health care providers. However the design of these different models of care was restricted to specific locations or phases of care which precluded continuity of care, and the implementation of interventions was not clearly considered or described.

            Continuity of Care

            This synthesis of the evaluations of paediatric models of care demonstrates the positive outcomes for parents of critically ill children at specific phases of care, such as in the PICU or following the transfer of their child from the PICU to the ward. However, children who have suffered critical illness are often transferred several times during their hospitalisation. The transfer of a patient to a different care setting should be accompanied by prompt, relevant and accurate communication about the episode, including details of active clinical problems and plans for ongoing management (
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            concluded that whilst FCC based clinical rounds are a starting point for collaboration around plan making, they do not guarantee that collaboration between clinicians and families always occurs. To maximise sustainable success, the implementation of any model of care or intervention should consider the principles outlined in Table 3 and develop strategies to address potential barriers to implementation. Care models should also be designed to change clinical practice behaviour and improve the uptake of evidence into practice (
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            Table 3Principles for implementing a care delivery model.
            Principle
            a
            Adapted from Agency for Clinical Innovation (2015) and Titler (2008).
            Description
            Consider the settingConsider the hospital context/setting and engage the health care professionals who are at the front line of care for critically ill children and their families
            Illustrate the reason for implementationIllustrate through quantitative or qualitative data the reason the hospital is implementing the model. Clinicians are more engaged in changes to practice when they understand the evidence base of the practice
            Invest in tools and skillsEducation in the implementation of the model of care is not enough, hospitals need to invest in the tools and skills needed to create a culture that embraces the model of care, where questions are encouraged and systems are put in place to make it easy to follow the model of care
            Engage stakeholdersIdentify clinician champions who can lead by example and engage stakeholders (other clinicians as well as families). Stakeholder acceptance of the model is critical to its success
            Pilot the modelPiloting the model is essential to determine the best fit for the hospital context and the setting of care delivery. There is no uniform way to implement a care delivery model and the hospital may need to modify to fit the hospital's culture and context
            Evaluate outcomes and processesEvaluate the outcomes and processes of implementation. Stakeholders need to know that the efforts to improve care delivery have a positive impact on quality of care through provision of feedback on performance
            Ensure sustainabilityOnce in place, ongoing monitoring will ensure the model is embedded in routine practice and working in the way it was planned. It will also provide information needed to adapt and change the model to optimise effectiveness if required
            a Adapted from
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            Conclusion

            Models of care applying FCC principles targeting critically ill children and their families can create positive changes in care delivery for the family. However a model which provides continuity across the span of care is required, and there is need to describe how best to design, implement and sustain such models. The success of any intervention implementation will be dependent on the comprehensiveness of the strategy for implementation, the relevance to the context and setting, and engagement with key stakeholders.

            Competing Interests

            The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

            Acknowledgments

            The authors acknowledge Lynsey Willenberg and Dr Claire Wakefield for their contributions to background literature searching. This study was funded, in part, by The Day of Difference Foundation.

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            Article info

            Publication history

            Published online: December 14, 2015
            Accepted: November 7, 2015
            Received in revised form: November 6, 2015
            Received: May 1, 2015

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            DOI: https://doi.org/10.1016/j.pedn.2015.11.009

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