REVIEW

Family-centred care in the paediatric intensive care unit: an integrative review of the literature Ashleigh Butler, Beverley Copnell and Georgina Willetts

Aims and objectives. To review extant research on family-centred care in a paediatric intensive care environment and identify gaps in the literature. Background. Family-centred care is currently a core concept in paediatric nursing, focusing on the premise that families are central to a child’s well-being, and as such, should be included as equal members of the child’s healthcare team. Due to the nature of critical care, family-centred care may be challenging to implement and maintain. Design. An integrative literature review. Methods. The review was conducted using the Cumulative Index to Nursing and Allied Health Literature, PubMed, OVID MEDLINE and Google Scholar databases, from 1990 to present. The search focused on the following terms: ‘p(a)ediatric critical care’, ‘paediatric intensive care unit’, ‘family cent(e)red care’, ‘parental needs’, ‘family presence’ and ‘family/nurse roles’. Additionally, the search was limited to studies conducted in a developed country and published in English. Results. Eighteen studies were included in the review. The results demonstrated that implementing family-centred care into a paediatric intensive care environment posed several challenges. The discrepancy between nurses’ and parents’ perception of their roles, the reluctance of medical staff to share potentially negative or rapidly changing information, restrictive family presence and poor understanding of family needs emerged as the key difficulties. No studies evaluated strategies to improve family-centred care practice. Conclusions. Family-centred care presents many challenges in a paediatric intensive care environment; however, nurses are uniquely positioned to foster relationships with families, encourage accurate and honest information sharing and advocate for families to be present when they choose. Relevance to clinical practice. This review outlines the extant research to enhance awareness of the unique state of family-centred care in paediatric intensive care and makes recommendations for future research.

What does this paper contribute to the wider global clinical community?

• This review identifies deficits in

•

the practice of family centred care in the paediatric intensive care environment. The review recommends that strategies to improve family centred care should be developed and evaluated as a focus for new research.

Key words: challenges, family presence, family-centred care, information sharing, nurse and family roles, paediatric intensive care Accepted for publication: 3 September 2013 Authors: Ashleigh Butler, RN, Clinical Nurse Specialist, ICU, Monash Medical Centre, Clayton, Vic. and Masters Student, School of Nursing and Midwifery, Monash University, Clayton, Vic.; Beverley Copnell, PhD, RN, Senior Lecturer, School of Nursing and Midwifery, Monash University, Clayton, Vic.; Georgina Willetts, PhD, RN, Senior Lecturer, School of

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Nursing and Midwifery, Monash University, Clayton, Vic., Australia Correspondence: Ashleigh Butler, Clinical Nurse Specialist, C/O ICU, Monash Medical Centre, 246 Clayton Road, Clayton, Vic., Australia. Telephone: +61 03 9594 3196. E-mail: [email protected]

© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2086–2100, doi: 10.1111/jocn.12498

Review

Introduction Family-centred care (FCC) concepts currently form the foundation of paediatric nursing in many countries around the world (Institute for patient & family centered care 2010, Sloane & Holt 2010, Australian Institute for Patient & Family Centred Care 2011). FCC had its origins in seminal research by Bowlby (1953) and Robertson (1970), which demonstrated significant negative consequences of separating children from their parents, and has since evolved further (Jolley & Shields 2009). As a result, a formal definition of family-centred care was developed by the Association for the Care of Children’s Health in 1987 (Shelton et al. 1987). Family-centred care has been widely studied in the general paediatric context. A systematic review of qualitative studies on family-centred care in paediatrics was undertaken by Shields et al. (2006), which uncovered two main themes emerging from each of the 11 studies assessed: negotiation, which was noted to be the key to successful FCC interactions, and roles, which acknowledged the flexibility of the role of nurse and parent. As a result, Shields et al. (2006) modified their definition of FCC, stating it surrounded the care of children and families in healthcare services, which ensures that care is planned around the whole family and not just the child. A Cochrane review on the topic (Shields et al. 2007) found insufficient evidence of the benefits of family-centred care compared with standard care models, mainly due to a lack of rigour in identified studies. The authors concluded that further quantitative research is needed to compare the philosophy to medical-centric care models and quantitatively measure any benefits (Shields et al. 2007). More recently, Foster et al. (2010) conducted a systematic review to examine literature on healthcare professionals’ and parental experiences of FCC. Four main themes emerged from the 15 studies assessed: communication; roles and relationships; caring for parents; and resources. The review examined papers from both developed and developing countries and noted that whilst role negotiation and relationships between parents and healthcare providers were important in both developed and developing countries, nurses in developed countries placed more emphasis on communication than did parents, a situation which was reversed in most developing countries (Foster et al. 2010). Building on current knowledge, Harrison (2010) undertook a literature review to examine the current state of FCC in paediatrics and found three overriding themes amongst 30 assessed studies. Observations of parent–nurse interactions described the different types of relationships that can occur © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2086–2100

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between nurses and parents, ranging from an equal, complementary partnership to care completely dominated by the nurse. Parents’ perspectives again focused on the relationship between the nurse and the caregiver and described the value and provision of FCC as viewed by the parent. Finally, perspectives of health professionals typically displayed reservations in the provision of FCC, with nurses’ and health care professionals’ reluctance to give up their caregiver or decision-maker roles (Harrison 2010). In the paediatric intensive care (PICU) environment, implementation of FCC has been identified as problematic. Commentators cite increased demands on the nurse for technical expertise, increased levels of involvement with technology and a specific nursing focus on the child (Tomlinson et al. 2002, Foglia & Milonovich 2011) as impediments to its practice. In the PICU environment, nurses are faced with increasing patient acuity, increasing demands on nursing resources and high patient and family needs, leading to activities that promote task-oriented nursing care and unofficial closure of the PICU to the child’s family (Foglia & Milonovich 2011). ‘Unofficial closure’ is the term given to discouragement of parental presence. This is achieved by staff through subtle signs such as a lack of chairs, subtle nursing comments and outright requests that families leave, in spite of open visitation policies (Giganti 1998). A number of authors have provided advice on how to achieve FCC in this environment (Rushton 1990, Just 2005, Adler 2009), and a clinical guideline has been developed in the USA to assist staff in supporting families in NICU, PICU and adult ICU (Davidson et al. 2007). Despite this, the current FCC practices of PICUs vary worldwide, and whilst no literature was available to identify trends, anecdotal evidence suggests wide variation even at a local level. Research into FCC in PICU is limited, and despite a large number of reviews on FCC in general paediatrics, no similar review could be found relating to a PICU environment.

Aim The aim of the literature review was to examine extant research on family-centred care in PICU and identify gaps in the literature. For the purpose of this review, PICU is defined as any critical care or intensive care unit, which provides care for children aged less than 18 years. Units caring primarily for neonates are excluded.

Methods A literature search was conducted using databases Cumulative Index to Nursing and Allied Health Literature

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(CINAHL), PubMed, OVID MEDLINE and Google Scholar. The search terms used were ‘p(a)ediatric critical care, p(a)ediatric intensive care, PICU, family cent(e)red care, parental needs, family presence and family/nurse roles’. The search was limited to studies between 1990 and present day, reflecting the change in practice after the publication of the official definition of family-centred care by the Association for the Care of Children’s Health (ACCH) in 1987. Studies were also retrieved from the reference list of each reviewed paper and assessed for relevance. The papers retrieved from the search were then reviewed for inclusion based on the criteria in Table 1. All relevant articles were included for review. Articles relating to family presence during resuscitation or palliative care were excluded due to the expansive nature of the topic and the extensive literature reviews already in existence. A flow chart of the search strategy can be found in Fig. 1. This strategy resulted in 18 articles for appraisal, which are summarised in Table 2. Each article was then critically appraised using the questions from the Critical Appraisal Skills Programme (CASP 2010). The studies were evaluated using the checklists for both qualitative and quantitative studies to determine appropriateness for inclusion in the review. The majority of articles were published in the USA (n = 7), with four Canadian, two Australian, two Dutch, one Belgian, one French and one South African studies. For the majority of studies, a single-centre study and small sample size were the major limitations, impacting on statistical generalisability. There was a large discrepancy noted in discussions of the development and validity of questionnaires. Four studies failed to provide information on the development of the questions or whether validity of the tool was assessed in the current environment (Tughan 1992, Maxton 1997, Petersen et al. 2004, Latour et al. 2009). Two studies

used tools previously developed from other studies; however, only one study (Sturdivant & Warren 2009) noted that the tool was changed to reflect the current study’s aims. One study centred on a single case study and did not provide details on ethics or data collection (Gill 2005). However, this study was included as it identified the significance of the case study approach as a well-established research design that should not be discarded simply on the basis of singular sample size (Pope et al. 2000). The researcher bias was also not discussed in any of the qualitative studies that used interviews or observation. The main strengths of the studies assessed surround either multimodal data collection (Jefferson & Paterson 2001, O’Haire & Blackford 2005, Aronson et al. 2009, Cameron et al. 2009, Macdonald et al. 2012) or multiple techniques or assessors for data analysis (Cameron et al. 2009, Latour et al. 2010, Ames et al. 2011, Macdonald et al. 2012, Soury-Lavergne et al. 2012). An outline of each article’s strengths and limitations is included in Table 2.

Results The included studies addressed four main topics, as identified within the articles: the role of the nurse and family; family presence; information sharing; and family needs. Findings from the studies are presented in narrative form under each of these headings.

Nurse and family role Four of the papers discussed the role of the nurse and family in the PICU (Martens et al. 2008, O’Haire & Blackford 2005, Ames et al. 2011, Macdonald et al. 2012). O’Haire Search of databases

Identified from reference lists

Table 1 Inclusion and exclusion criteria Inclusion criteria

Exclusion criteria

Published in or after 1990 Conducted in, or related to, a paediatric intensive care unit (PICU) setting Discuss family-centred care or working with families Discuss needs of parents, nurses or health professionals Published in English

Published prior to 1990 Relates to context other than PICU

Primary research study Conducted in developed country

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Relates to resuscitation or palliative care Relates to needs of students or organisations Published in language other than English Not a primary research study Conducted in a developing country

76 articles assessed

39 articles discarded

37 articles assessed in detail

24 articles discarded

13 articles included

10 articles assessed

5 articles discarded

5 articles included

Figure 1 Flow chart of literature search.

© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2086–2100

Aim To explore nurses’ and doctors’ perceptions towards involvement in care, communication with parents and nursing role

To identify parents’, patients’ and staff perceptions relating to visiting in the PICU

To review factors that impact nurses’ and doctors’ perceptions of parental presence and participation

To identify parental needs as viewed by parents and nurses

Author (Year)

Stern et al. (1991) USA

Tughan (1992) Canada

Maxton (1997) Australia

Scott (1998) USA

Table 2 An outline of the articles reviewed

© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2086–2100 21 Parents and 17 PICU nurses

21 Nurses, 26 clinical nurse specialists, 21 doctors and four other staff

25 Paediatric patients (ages 5–18 years), 53 parents and 65 staff members in PICU

Five paediatric intensive care unit (PICU) nurses and two doctors

Participants

Descriptive comparative study

Qualitative survey – pilot study

Qualitative questionnaire

Quantitative questionnaire

Methods

Parents listed eight items as most important, including proximity to child, information and assurance; however, only information was identified

Staff identified numerous reasons to ask parents to leave the PICU. Nurses felt parents added to their workload and were reluctant to give up caregiving role

Staff and families in unison over some aspects of family presence’ however, staff felt families should be asked to leave for ward rounds and procedures

Nurses not recognised as having a role in communication with family most commonly associated with medical consultants. Nurse’s role is seen as multifactorial by nurses and medical staff

Key findings

The study provided a good sample of the nurses and medical staff from the unit; however, the number of nurses far outweighed the doctors, leading to sample bias. Additionally, data collection methods were inadequately described. Single-centre study The study covered a wide range of opinions, including family members, patients and staff, and included a thorough description of data analysis; however, neither the impact of the different wordings of the questionnaire nor the impact of the researcher on the children’s responses was considered The study had no ethical clearance. There was no discussion surrounding development of survey or tests for validity. The study used a multimodal approach to data collection and examined perceptions of staff from two recently merged PICUs Although the sample included 30 parents and 23 nurses, only 21 parents (the female caregivers) and 17 nurses (primary care nurses) had results

Strengths and limitations

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To determine nurses’ perceptions and practices of familycentred care concepts

Petersen et al. (2004) USA

Gill (2005) USA

10 Nurses and five doctors in a PICU

To investigate the decision-making of health care professionals relating to parental presence during procedures

Jefferson and Paterson (2001) Canada

One case study

62 Nurses (25 PICU and 37 NICU)

Participants

Aim

Author (Year)

Table 2 (Continued)

included in analysis. Impact of this not discussed. Exclusion of male caregiver opinion. Limited data analysis discussed Study conducted across a single site with a small sample size. The study uses multiple methods of data analysis, including member checks and triangulation with field notes, enhancing credibility of data. Additionally, the study considered the effects of current events in PICU on the results The study was a replication of another study and thus used an old questionnaire, which was not validated in the current setting. The study was conducted across a single centre Single case study used to provide basis for the discussion of information sharing. Researcher bias not considered

by nurses as most important need

Identification of discrepancy between highest-rated elements necessary and currently practised for familycentred care

Medical staff are unwilling to allow parents to make the wrong choice and feel parents are emotionally ill-equipped to handle negative news. Doctors are unwilling to share uncertain outcomes. Institutional factors, such as medical rotation, negatively impacts information sharing

Case study – qualitative

Two main goals were found, which influence a healthcare provider’s decision to ask parents to leave during invasive procedures

Strengths and limitations

Key findings

Quantitative questionnaire

Qualitative interpretive description

Methods

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Aim To investigate issues for nurses in facilitating parental participation in HDU settings

To evaluate the attitude of mothers and nurses relating to parental participation in the PICU

To investigate the impact of family presence on ward rounds in the PICU

To investigate the impact of families on ward rounds

Author (Year)

O’Haire and Blackford (2005) Australia

Martens et al. (2008) Belgium

Aronson et al. (2009) USA

Cameron et al. (2009) USA

Table 2 (Continued)

© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2086–2100 130 Observed ward rounds, 36 interviewed parents, 186 surveys from healthcare providers

411 Observed patient encounters, survey of 98 families, 33 resident reviews

53 Mothers and 47 nurses

Nine nurses

Participants

Mixed method

Prospective observational study

Quantitative survey

Qualitative grounded theory

Methods

Minimal increase in length of ward round with families present. Mixed response from healthcare providers relating to family presence, positive experience for families

Identification of moral agency as the primary phenomenon, with nurses acting in the child’s best interest, disagreeing with parents about care and having expectations of the parents Mismatch between parents’ and nurses’ expectations on care provision. Mothers often want to take on more technical aspects of care, with nurses unwilling to allow this The study found family presence on ward rounds increased parental satisfaction and confidence. Minimal increase in ward round time with family presence

Key findings

The study was conducted across a single site, with observations occurring on weekday mornings only. The impact of the observer on the ward round was not discussed. The study used multiple methods of data collection and standardised observation tools, leading to increased credibility of the data Single site study. The medical teams were not blinded to the presence of the observer, which may impact accuracy of results. Interviews with parents were handwritten, rather than audio taped, potentially leading to inaccurate results. There was a multimodal

Large, multicentre study. Use of Pilot test for questionnaire tool. No discussion of results presented

The study was conducted across a single site with a small sample size. However, multiple data collection methods were used, enhancing credibility of data

Strengths and limitations

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To explore and identify parents’ experiences of PICU admission

Sturdivant and Warren (2009) USA

Latour et al. (2010) the Netherlands

To understand the parents’ perception of parental roles in PICU

To investigate parental satisfaction with care in the PICU

Latour et al. (2009) the Netherlands

Ames et al. (2011) Canada

Aim

Author (Year)

Table 2 (Continued)

Seven parents

Seven PICUs, with six parents per PICU

20 PICU families

559 PICU parents from seven PICUs

Participants

Qualitative interpretive interviews

Qualitative interviewing

Pilot study

Multicenter prospective cohort study

Methods

Three main themes emerged: being present and participating in care, forming a partnership of trust, and being informed of the child’s progress

Five main themes emerged: the attitude of professionals, coordination of care, emotional instability, information management and parent participation

Families listed items such as information sharing, talking to medical staff and being near the child as always met, but noted that other psychosocial needs were often unmet

Parents consistently ranked highly items relating to the provision of information. Parents ranked having a clean and cared for child higher than flexibility in visitation hours

Key findings

approach to data analysis, and two independent investigators were used for data analysis Large, multicentre study, with excellent data analysis techniques. The study was limited by the questionnaire items being derived from the literature and by a lack of discussion surrounding validity of the tool Limited by a single-centre study. The researchers used a previously developed questionnaire, but did not discuss validation of the tool in a new setting. Presentation of the data was ambiguous Large, multicentre trial. Use of member checks to enhance data credibility. There is limited use of data to support the themes and limited discussion of the themes themselves. No discussion of development of interview questions or influence of researcher The study was a single site study with a small sample size. The sample covered a good range of mothers and fathers of both planned and emergency admissions. Member

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Aim

To explore the experiences of families in PICU

To identify stressors for mothers with children in the PICU

To determine caregiver opinions on their ICU visiting policy’s hours, family provision of care and parental presence

Author (Year)

Macdonald et al. (2012) Canada

Roets et al. (2012) South Africa

Soury-Lavergne et al. (2012) France

Table 2 (Continued)

© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2086–2100 731 Staff members (nursing, medical, physiotherapy) in 222 adult and 41 paediatric ICUs

62 Participants across five PICUs

12-Month observation and interviews with 18 participant families

Participants

Questionnaire

Questionnaire

Ethnographic study

Methods

The majority of responders from PICU settings felt that unrestricted visitation improves relationships with families, but rarely disturbs care. Respondents often included families in care of the child and planned care for family participation

An overriding theme of the PICU as the office versus the bedroom was noted; underlying themes included a change from parent and child to patient and visitor, and the place of the family in family-centred care Highest-ranked stressors included commencement of illness, child’s pain, medical procedures, emotional separation and fear of child’s death. Despite this, almost all mothers wished to be involved in child’s care

Key findings

checks and investigator triangulation were used to enhance credibility A single-site study with a small sample size limits the generalisability. The study did cover weekdays, weekends and evenings over a 12-month period and used multiple methods of data collection and analysis Large, multicentre study, including both public and private hospitals. The questionnaire tool was well validated. The study was limited to parents of children under 12 years of age and might not be transferrable to PICUs with older children. Minimal discussion of data analysis Large, multicentre study, which includes the views of a large sample of doctors, nurses and allied health. The results are difficult to interpret as they are often not broken down into adult ICU vs PICU or nurse vs doctor. There is little discussion on the validation of the questionnaire

Strengths and limitations

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and Blackford (2005) argued that within a PICU environment, the roles of the nurse and the parents are often entwined, necessitating a negotiation between the parent and the nurse in caring for the child. The study found that differences in the parents’ knowledge and the nurses’ highly technical knowledge created a power struggle. Often, nurses had expectations regarding how parents of children in the PICU should behave. O’Haire and Blackford (2005) identified that nurses typically expected all parents would want to be involved in what they termed the child’s ‘basic care’. The discrepancy between the role expectations of the nurse and parent was also documented in a study by Martens et al. (2008). The study examined the perspectives of 53 mothers and 47 nurses across two sites in Belgium, using a questionnaire to determine views on parental participation in active (such as feeding, hygiene, wound care and medications) and passive (such as comforting, being updated and being present) care activities. The results showed that only minor inconsistencies existed between nurses’ and parents’ views on parental participation in all simple aspects of active care (Martens et al. 2008). Active care included oral feeding, hygiene and administration of oral medications, and some technical aspects, such as burns dressings and IV medications (Martens et al. 2008). However, when considering more technical aspects of active care, mothers often wanted to participate more than nurses were willing to allow, with 29% of mothers feeling able to provide hygiene care to a technically complex ventilated child, whilst 55% of nursing staff had a negative attitude towards parents providing this type of care (Martens et al. 2008). Additionally, only 14% of staff agreed that mothers can provide wound care to their child, whilst 57% of mothers felt this was a task they could complete, perhaps indicating that mothers want to take on more of a technical role in the care of their child in PICU than nurses are willing to allow (Martens et al. 2008). Parental participation in their child’s care is a major aspect of the parental role. In a qualitative study of seven parents of children in the PICU, Ames et al. (2011) found that ‘being present and participating in care’ was a key theme in the parental role in PICU. They noted that parents often looked for ways to interact with their child and valued tasks such as providing comfort and reassurance and being present, as well as more active tasks such as changing nappies and providing feeds to the child (Ames et al. 2011). Parents in the study, however, expressed a need to ask permission when interacting with the child and recognised that they had to give up their role as primary caregiver to the healthcare team. Instead, they felt that a large part of the parental role was to form a ‘partnership of trust’

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with the healthcare team and ensure they were well informed of the child’s condition and could understand the care provided (Ames et al. 2011). The inequality of the role of the nurse and the parent in a PICU environment was described by Macdonald et al. (2012), who used observation and interviews to explore the experiences of families in the PICU. Although staff were noted to actively encourage families to decorate the child’s bed area and be with their child, families were often reminded not to touch the equipment or the child, despite the observation that staff frequently leant or sat on equipment such as bedside poles or the bed itself (Macdonald et al. 2012). Families were also regularly asked to keep noise levels to a minimum and were required to stay close to their own child for confidentiality, whilst nurses frequently spoke about other patients, adding significantly to noise levels in the PICU (Macdonald et al. 2012). The study demonstrates the nurse’s ownership of the PICU environment, whilst the families of children are often visitors to a unique environment. Macdonald et al. (2012) found that parents, in their own view, often change from the protector of the child to a helpless watcher over the child’s care and are often asked to leave on the basis of confidentiality or crowd control.

Parental presence Six studies examined family presence in the PICU, including family presence on ward rounds and during procedures (Tughan 1992, Maxton 1997, Jefferson & Paterson 2001, Aronson et al. 2009, Cameron et al. 2009, Soury-Lavergne et al. 2012). Parental presence with their hospitalised child is a key element of FCC, central to maintaining the family unit and incorporating the family as an equal partner in the child’s care (Shelton et al. 1987). To investigate the perceptions of parents and staff, Tughan (1992) conducted a survey of patients, staff and parents in a 22-bed Canadian PICU. Although both staff and parents felt that there should be a one-hour break during the day and no time limit to visitation, they were divided on the issue of parents being present for ward rounds and procedures. Parents felt that they should be allowed to be present for procedures, but were divided on being present for ward rounds. Staff, however, felt that it was inappropriate for parents or visitors to be present for ward rounds or procedures, citing confidentiality, the risk of parents misinterpreting information and increased efficiency as the primary reasons for asking them to leave (Tughan 1992). Other studies show a lack of consistency amongst healthcare providers when questioned about parental presence. Maxton (1997) noted © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2086–2100

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that nurses often felt that parents were a burden rather than a benefit, finding that although 79% of the 72 PICU nurses surveyed said that parents should visit at all times, 60% felt that parents got in the way and should be asked to leave at times, due to a lack of space, distractions to nurses and medical staff and the patient becoming unstable. A French study of 731 staff (medical, nursing and allied health) from 221 adult and 41 paediatric ICUs examined caregiver opinions on practicalities of FCC in ICUs (SouryLavergne et al. 2012). The study included 100 respondents from a PICU setting, of which 15% said that unrestricted visitation disrupts the organisation of care provision. Despite this, 66% of respondents noted that families often participate in care, with families rarely asked to leave for routine nursing care activities (Soury-Lavergne et al. 2012). It should be noted that the study did not delineate participants as nurses, doctors or allied health, instead grouped them all together as caregivers. Two studies addressed the issue of parental presence during ward rounds. Aronson et al. (2009) conducted a prospective observational study in a 45-bed American PICU, observing weekday morning ward rounds and then distributing a questionnaire to families and residents. Over a period of 25 days, 411 patient encounters were observed, with families present for approximately 25% of those encounters. Of the 98 families who completed the survey, 97% felt it helpful to hear the discussion of their child and 91% found that the medical round gave them increased confidence in the medical team (Aronson et al. 2009). The medical staff, however, continued to cite concerns relating to decreased teaching time and increased length of time when families were present, despite a minimal average time increase from 9
6–10
6 minutes (Aronson et al. 2009). A similar study was conducted by Cameron et al. (2009) in a 32-bed American PICU, with 130 patient rounds observed over 10 weeks. The researchers also provided surveys for the staff and conducted semi-structured interviews with parents who had and had not participated in a ward round event. Similarly, the study found that ward round times were only marginally increased with a parent present, from 15  7 minutes with no parent to 15  9 minutes with a parent present (Cameron et al. 2009). Again, parents felt that their presence on ward rounds increased their satisfaction with care, and although 106 of 186 healthcare providers reported learning something new about the child, 59 of 186 still maintained that parental presence limited discussion of prognosis (Cameron et al. 2009). The notion that medical tasks cannot be performed efficiently with parents present is not confined to ward rounds. © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2086–2100

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Jefferson and Paterson (2001) examined the beliefs of 10 nurses and five doctors towards parental presence during invasive procedures. They found that the two main goals, to perform a procedure with maximal efficiency and minimal disruption, and to maintain the integrity of the child– parent relationship, were incompatible in the opinion of physicians. Those healthcare providers who felt that the primary goal was technical success believed that the procedure was compromised if the parent was present. Technical success, according to the physicians interviewed, could not be achieved whilst maintaining the parent–child relationship (Jefferson & Paterson 2001). Healthcare providers were concerned that watching the child in pain may jeopardise the caring relationship between child and parent and worried that the trauma of the procedure for the parent might negatively influence the outcome (Jefferson & Paterson 2001).

Information sharing Four studies focused on information sharing with families in PICU (Stern et al. 1991, Petersen et al. 2004, Gill 2005, Latour et al. 2010). Information sharing is a cornerstone of FCC; without it, families are unable to participate in decision-making for their child and are therefore unable to form an equal partnership with healthcare providers. Despite its importance, studies suggest that information sharing in the PICU is not always accomplished. In a study of FCC elements, Petersen et al. (2004) examined the opinions of 62 nurses from an American PICU and found that in nurses’ opinions, information sharing was ranked second only to recognition of family individuality in importance to FCC practices; however, it did not rank amongst the highest-rated elements of FCC in the nurses’ current practice. Additionally, in a study of nurses’ and doctors’ perceptions of participation in care, communication, decision-making and nurses’ roles, five PICU nurses and two doctors answered questionnaires twice per week for three months in an American PICU (Stern et al. 1991). Nursing staff felt that 45% of the time, there was no one allocated to communicate with the families, but that when there was, it was most frequently the medical consultant. Doctors agreed with nurses that consultants are most commonly responsible for communication with the families and, in contrast to the nurses, felt that there was a person allocated to the task most of the time. Interestingly, although 94% of nurses and 73% of medical staff said that the nurse’s role was to provide support to the family, neither the medical staff nor the nurses themselves mentioned nurses as responsible for communication with the families, despite being at the bedside

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constantly (Stern et al. 1991). This uncertainty concerning the nurse’s role in information sharing is a potential source of confusion and poor information sharing between the healthcare team and the family. Communication in the PICU is also often limited, due to the doctor’s desire to control the potential ‘wrong choices’ made by parents. Gill (2005) found that medical staff were unwilling to allow parents to make what they perceived to be the wrong choice for the patient, as the person who would suffer the consequences from the decision was the child, not the parent themselves. Additionally, parents were often seen as emotionally ill-equipped to take part in decisions, with medical staff withholding information out of fear that bad or uncertain news would only lead to unnecessary suffering on the part of the parent and might cause harm to the relationship between parent and child. Gill (2005) cited the rotation of medical staff through the PICU as another barrier to open communication, as each doctor felt the need to abide by the consensus of other doctors until they had time to get to know the patient and reach a decision for themselves. Despite beliefs that parents should not be told uncertain information for fear of increased mistrust of health professionals, Latour et al. (2010) found that parents appreciated honesty in information sharing, including being honest about uncertainty. The parents interviewed for the study felt that the medical staff should make treatment choices for the child, although they should still have a role in decision-making, and noted that being told about uncertainty in the child’s diagnosis or treatment helps to build their trust in healthcare professionals (Latour et al. 2010).

Parental needs Four studies examined parental needs in PICU (Scott 1998, Latour et al. 2009, Sturdivant & Warren 2009, Roets et al. 2012). Sturdivant and Warren (2009) undertook a study to examine families’ perceptions of met and unmet needs in the PICU. They found that although families were happy with their ability to talk to medical staff and obtain information about their child, parents felt the psychosocial aspects of care, such as social work and pastoral care, were rarely met (Sturdivant & Warren 2009). This suggests that although the PICU staff incorporate information sharing with families into their everyday practice, families are not assessed individually and offered support services as required. Additionally, parents mentioned that although they were able to see their child every day, they rarely had the same nurse, leading to inconsistencies in care and information sharing (Sturdivant & Warren 2009). Similar findings were seen in a study by Latour et al. (2009), where

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results indicated that families valued information about their child’s condition above all else. Latour et al. (2009), in a survey of 559 parents of children across seven PICUs in the Netherlands, also found that instead of encouraging parents to stay, families valued being able to trust the nurse or doctor, indicating that whilst parental presence is important to both the parent and the child, families would rather trust that their child is safe with medical professionals than maintain a constant bedside vigil. Parents of children in intensive care are faced with a number of unique stressors, which can often influence their needs. Roets et al. (2012) undertook a study of 62 participant mothers across five public and private PICUs in South Africa. Mothers identified their child’s pain as the most common source of stress, followed closely by the sudden commencement of the illness, medical procedures and their emotional separation from the child. In contrast to many other studies, inadequate or inappropriate information was only mentioned as a stressor 30% of the time. It should be noted that this study was conducted in South Africa, and no mention is made of the hospital setting (modern or traditional), and thus, it is unclear whether information sharing is significantly influenced by the cultural setting. Despite over 80% of the mothers expressing the desire to share their emotions, only 59
7% were ever questioned about their emotional needs by the nurses, indicating a lack of awareness on the part of the nurse (Roets et al. 2012). Although nurses are typically the healthcare professionals who spend the most time with the child’s family, they are not necessarily able to determine the needs of a family. A study by Scott (1998) found a discrepancy between the most important family needs as identified by the families themselves and by the nurses. A descriptive comparative survey was conducted with 30 parents and 23 PICU nurses over a nine-month period. Families unanimously listed eight of 10 items as the most important needs: feel that hospital personnel care; to see the child frequently; to be called at home about changes; to be assured that the best care is being given; to know how the child is being treated medically; to visit at any time; to have questions answered honestly; and to know the expected outcome. Nurses, however, listed only one item as most important: to know how the child is being treated medically. To receive information once a day, feel there is hope, be assured the best care is given, have questions answered honestly and to know the expected outcome were all listed as equal second, at 90% importance, by the nursing staff, with freedom of visitation listed as important 85% of the time (Scott 1998). This suggests that there is a difference in the perceived needs of the families by the nurses and the parents themselves, even © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2086–2100

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though both groups ranked information and proximity to the child as more important than support or comfort. Additionally, the parents felt that talking to the same doctor was very important, a need which, although perceived as important, was ranked less highly by the nurses.

Discussion Family-centred care is a multifaceted philosophy, centring on an equal relationship between family members and healthcare professionals, parental presence and participation, and open and honest information, and requires collaboration between all healthcare professionals, the child and their family. The findings of the studies indicate that, whilst many PICUs advocate a family-centred care policy, in reality, nursing and medical practice does not always meet the ideal. Within the PICU, the nursing and parental roles become enmeshed. Many parts of the parental role, such as protecting and caregiving, are undertaken by the nurse, leading to participation in care becoming a key aspect of the parent’s role in PICU. Parents lose control over caregiving and are required to ask permission of the staff to interact with their child (Ames et al. 2011), often desiring more participation than they are allowed (Martens et al. 2008). This appears to create an inequality between the authority of the nurse and parent, linked to the highly technical knowledge of the nurse, nursing expectations of parental behaviour and the nurses’ ownership of the child and PICU environment (O’Haire & Blackford 2005, Macdonald et al. 2012), impacting negatively on the development of an equal relationship between parents and nurses. The literature findings would suggest that to participate fully in their child’s care, parents need unrestricted access to the PICU and their child. Despite the positive findings that family presence on ward rounds does not significantly increase ward round times, but rather increases family confidence in medical providers and may provide the medical staff with new information about the child (Aronson et al. 2009, Cameron et al. 2009), family presence in PICU continues to be a topic of debate. Nurses and other healthcare professionals continue to be divided on family presence for ward rounds and procedures, with some staff citing concerns over confidentiality, distractions to staff or compromise to the technical success of the procedure being carried out (Tughan 1992, Maxton 1997, Jefferson & Paterson 2001). The studies’ conclusions allude to the possibility that parents face difficulty in obtaining honest and open information, which potentially hinders the development of an equal partnership between parent and healthcare provider. © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2086–2100

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Although nurses recognised that information sharing is a key aspect of FCC, it was not ranked amongst the highest FCC practices (Petersen et al. 2004). This inconsistency is likely multifaceted: nurses were not recognised as providers of information to the family and often felt that no one had taken on the responsibility of communicating with the family (Stern et al. 1991), and medical staff felt that uncertain or bad news had only negative consequences and were unwilling to allow parents to make wrong choices. The included studies were conducted in a number of countries across North America, Europe, Australia and South Africa. Considerable differences exist between countries in the structure of healthcare systems, provision of PICU services and education of nurses and other healthcare professionals. Despite these differences, the findings of the studies were remarkably consistent. No studies were found that investigated the impact of contextual or cultural factors on the practice of FCC in PICU. Moreover, in research spanning more than 20 years, there was little evidence of improvement over time. It was notable that the nine studies conducted since the publication of a clinical guideline for American NICU, PICU and ICU settings (Davidson et al. 2007) indicated deficits in the provision of FCC, although it may be that there has been insufficient time for the guideline to have a measurable impact. The extent to which the guideline has been adopted remains to be elucidated, particularly as only three of the studies were conducted in an American setting. McKinley and Elliott (2008) conducted an evaluation of these guidelines to uncover relevance to an Australian setting, focusing mainly on adult ICUs, and found that although the guideline developments had some weaknesses, the guidelines remained largely applicable to an Australian critical care setting. They note, however, that the implementation of the guidelines would require further evaluation of patient and family viewpoints to ensure their experiences are also considered (McKinley & Elliott 2008). All the included studies focussed on practice of FCC and were either descriptive or interpretive in nature. No studies were found that evaluated strategies to improve any aspect of FCC. We recommend that this be a key focus of future research. As previously noted (Shields et al. 2007), no studies addressed the outcomes of FCC, and specifically there were no comparisons with other models of care. It is noteworthy, however, that parents consistently express a preference for the central tenets of FCC, that is, parental presence and participation and provision of open and honest information. No studies discussed organisation of nursing care in the study setting, that is, whether consistency of care was either

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aimed for or achieved. Rushton (1990) argues that consistency of care assists development of an open and honest relationship with parents, thus facilitating open discussions and overcoming communication barriers. Potential relationships between staffing patterns and provision of FCC are worthy of exploration. We noted variations in quality amongst the included articles. The chief limitations related to small sample sizes and use of unvalidated tools (or at least, lack of discussion of a tool’s validity). Research into this area would be greatly enhanced by the development of valid tools that could be used consistently across studies. There was considerable variation in the discussion of issues affecting validity, emphasising the need for standardised reporting in this area.

Conclusion This review has highlighted the challenges of implementing and sustaining FCC in the PICU environment. Both staff attitudes and institutional protocols are implicated in FCC practices. There is, however, limited recent research on FCC within the PICU context. There is a need for further research to ensure that this important aspect of care within the PICU environment remains contemporary and evidencebased. In particular, interventions to improve the provision of FCC should be developed and tested.

Relevance to clinical practice It is important for PICU nurses to understand the concepts and benefits of family-centred care to assist in managing the challenges associated with working with families in the PICU environment. Commonly, nurses are the healthcare professionals most closely associated with the patients’ families and are therefore uniquely positioned to determine the families’ ability to be present for procedures and ward rounds. As advocates for both patients and their families, it is the nurses’ responsibility to ensure the family has the

option to be present when they choose, both to have access to information shared on ward rounds and to be a source of comfort to their child during an invasive procedure. Nurses should also act as a resource to families should they choose to be present, supporting families through their choices and advocating for their rights. Nurses should examine their own beliefs and values relating to working with families. Further education relating to family-centred care concepts may assist in practising this model of care. Additionally, this literature review has revealed many institutional factors that lead to poor family-centred care, such as restricted visiting hours, especially during procedures or ward rounds, as well as limited information sharing. Hospitals need to constantly review their policies relating to family presence to ensure appropriate delivery of family-centred care.

Acknowledgement None.

Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ ethical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.

Funding None.

Conflict of interest None.

References Adler J (2009) Establishing patient-andfamily centered care in a non-academic pediatric intensive care unit. Physician Executive 35, 50–53. Ames K, Rennick J & Baillargeon S (2011) A qualitative interpretive study exploring parents’ perception of the parental role in the paediatric intensive care unit. Intensive and Critical Care Nursing 27, 143–150.

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Aronson P, Yau J, Helfaer M & Morrison W (2009) Impact of family presence during pediatric intensive care unit rounds on the family and medical team. Pediatrics 124, 1119–1125. Australian Institute for Patient and Family Centred Care (2011) What We Do. Available at: http://www.aipfcc.org.au/ whatwedo.html (accessed 5 January 2013).

Bowlby J (1953) Child Care and the Growth of Love. Penguin Books, London. Cameron M, Schleien C & Morris M (2009) Parental presence on pediatric intensive care unit rounds. Journal of Pediatrics 155, 522–528. Critical Appraisal Skills Programme (CASP) (2010) Critical Skills Appraisal Programme: Making Sense of Evidence.

© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2086–2100

Review Public Health Resource Unit, Oxford. Available at: http://www.casp-uk.net/ (accessed 20 May 2012). Davidson J, Powers K, Hedayat K, Tieszen M, Kon A, Shepard E, Spuhler V, Todres I, Levy M, Barr J, Ghandi R, Hirsch G & Armstrong D (2007) Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine taskforce 2004–2005. Critical Care Medicine 35, 605–622. Foglia D & Milonovich L (2011) The evolution of pediatric critical care nursing: past, present, and future. Critical Care Nursing Clinics of North America 23, 239–253. Foster M, Whitehead L & Maybee P (2010) Parents’ and health professionals’ perceptions of family centred care for children in hospital in developed and developing countries: a review of the literature. International Journal of Nursing Studies 47, 1184–1193. Giganti A (1998) Families in pediatric critical care: the best option. Pediatric Nursing 24, 261–265. Gill M (2005) PICU Prometheus: ethical issues in the treatment of very sick children in the paediatric intensive care. Mortality 10, 262–275. Harrison T (2010) Family-centered pediatric nursing care: state of the science. Journal of Pediatric Nursing 25, 335– 343. Institute for Patient and Family Centered Care (2010) What are the Core Concepts of Patient and Family Centered Care. Available at: http://www.ipfcc. org/faq.html (accessed 5 January 2013). Jefferson R & Paterson B (2001) Efficient or family-centered? Practitioners goals in decisions regarding parental presence during invasive procedures Dynamics, 12, 14–20. Jolley J & Shields L (2009) The evolution of family-centred care. Journal of Pediatric Nursing 24, 164–170. Just A (2005) Parent participation in care: bridging the gap in the pediatric ICU. Newborn and Infant Nursing Reviews 5, 179–187. Latour J, Van Goudoever J, Duivenvoorden H, Van Dam N, Dullaart E, Albers M,

© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2086–2100

Family-centred care in the PICU Verlaat C, Van Vught E, Van Heerde M & Hazelzet J (2009) Perceptions of parents on satisfaction with care in the pediatric intensive care unit: the EMPATHIC study. Intensive Care Medicine 35, 1082–1089. Latour J, Van Goudoever J, Schuurman B, Albers M, Van Dam N, Dullaart E, Van Heerde M, Verlaat C, Van Vught E & Hazelzet J (2010) A qualitative study exploring the experiences of parents of children admitted to seven Dutch pediatric intensive care units. Intensive Care Medicine 37, 319–325. Macdonald ME, Liben S, Carnevale FA & Cohen R (2012) An office or a bedroom? Challenges for family-centered care in the pediatric intensive care unit. Journal of Child Health Care 1, 1–13. Martens F, DeLoof S & Idrissi S (2008) Parental participation in care in the pediatric intensive care unit. Pediatric Intensive Care Nursing 9, 11–15. Maxton F (1997) Old habits die hard: changing paediatric nurses’ perceptions of families in the ICU. Intensive and Critical Care Nursing 13, 145–150. McKinley S & Elliott R (2008) Implications for Australian practice of North American guidelines for the support of the family in patient-centred intensive care. Collegian 15, 11–17. O’Haire S & Blackford J (2005) Nurses’ moral agency in negotiating parental participation in care. International Journal of Nursing Practice 11, 250–256. Petersen M, Cohen J & Parsons V (2004) Family-centered care: do we practice what we preach? Journal of Obstetric, Gynecologic, and Neonatal Nursing 33, 421–427. Pope C, Ziebland S & Mays N (2000) Qualitative research in health care: analysis of qualitative data. British Medical Journal 320, 114–116. Robertson J (1970) Young Children in Hospital, 2nd edn. Tavistock Publications, London. Roets L, Rowe-Rowe N & Nel R (2012) Family-centred care in the paediatric intensive care unit. Journal of Nursing Management 20, 624–630. Rushton C (1990) Strategies for familycentered care in the critical care setting. Pediatric Nursing 16, 195–199.

Scott L (1998) Perceived needs of parents of critically ill children. Journal of the Society of Pediatric Nurses 3, 4– 12. Shelton T, Jeppson E & Johnson B (1987) Family-centered Care for Children with Special Health Care Needs. Association for the Care of Children’s Health (ACCN), Washington, DC. Shields L, Pratt J & Hunter J (2006) Family centred care: a review of qualitative studies. Journal of Clinical Nursing 15, 1317. Shields L, Pratt J, Davis L & Hunter J (2007) Family-centred care for children in hospital. Cochrane Database of Systematic Reviews, Issue 1, Art. No.: CD004811. Sloane M & Holt J (2010) AWCH Patient and Family Centered Care. Available at: http://www.awch.org.au/pdfs/AWCHPresentation-090610.pdf (accessed 5 January 2013). Soury-Lavergne A, Hauchard I, Dray S, Baillot M, Bertholet E, Clabault K, Jeune S, Ledroit C, Lelias I, Lombardo V, Maetens Y, Meziani F, Reignier J, Souweine B, Tabah A, Barrau K & Roch A (2012) Survey of caregiver opinions on the practicalities of family-centered care in intensive care units. Journal of Clinical Nursing 21, 1060–1067. Stern P, Stroh S, Fiser D, Cromwell E & McCarthy S (1991) Communication, decision making, and perception of nursing roles in a pediatric intensive care unit. Critical Care Nursing Quarterly 14, 56–68. Sturdivant L & Warren N (2009) Perceived met and unmet needs of family members of patients in the pediatric intensive care unit. Critical Care Nursing Quarterly 32, 149–158. Tomlinson P, Tomlinson E, Peden-McAlpine C & Kirschbaum M (2002) Clinical innovation for promoting family care in paediatric intensive care: demonstration, role modelling and reflective practice. Journal of Advanced Nursing 38, 161–170. Tughan L (1992) Visiting in the PICU: a study of the perceptions of patients, parents and staff members. Critical Care Nursing Quarterly 15, 57–68.

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