The POPPY Study: Developing a Model of Family-Centred Care for Neonatal Units

 
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The POPPY Study: Developing a Model of Family-Centred Care for Neonatal Units
Original Article

The POPPY Study: Developing a Model
of Family-Centred Care for Neonatal Units
Sophie Staniszewska, DPhil, BSc (Hons), Jo Brett, BSc, MSc, MA, Maggie Redshaw, BA, PhD, C Psychol, Karen Hamilton, PhD, MSc, RSCN,
RGN, Mary Newburn, BSc, Nicola Jones, BSc, Lesley Taylor, BSc

                                                                              ABSTRACT
               Background: The concept of family-centred care in neonatal practice has become increasingly recog-
            nised internationally. The underlying philosophy puts parents and the family at the centre of health care
            and promotes “individualised, flexible care.”
               Aims: To develop the first international model of family-centred care based on strong parental collab-
            oration in the synthesis of robust research evidence to generate the philosophy, principles, model, and
            indicators for implementation.
               Methods and Synthesis: Seven key steps were followed to develop the POPPY model of care collabora-
            tively with parents. Step 1 drew on the POPPY systematic review to identify effective interventions. Step 2
            drew on the POPPY qualitative study to identify good parent experiences. Step 3 identified the philosophy
            and principles of the POPPY model of care. Step 4 identified the key stages of the POPPY model of care.
            Step 5 populated the POPPY model of care with data from steps 1 and 2. Step 6 developed the indicators
            of family-centred care; and Step 7 undertook some initial testing with parents and practitioners.
               Results: Seven key stages of the parents’ journey through their neonatal unit experience were identified
            and formed the architecture of the POPPY model of care. These include: before admission to the unit,
            admission, early days, growing and developing, transfers between units and between levels of care,
            preparing for discharge, and transition to home and at home. A philosophy, a set of principles to
            underpin the model, and a set of indicators to guide implementation in neonatal units were developed.
               Conclusion: The POPPY model of family-centred care provides the first robust, collaboratively devel-
            oped, parent-centred model, which can be implemented to deliver high quality care to parents of preterm
            infants.
               Implications: Implementing the POPPY model could help neonatal units to develop parent-focused
            services which better meet parents’ needs for information, communication and support, key elements of
            family-centred care.
            KEYWORDS family-centred care, neonatal, premature, infant, parents’ experiences, evidence-based practice

Sophie Staniszewska, Senior Research Fellow, Patient and Public Involvement and Patient Experiences, Royal College of Nursing Research Institute, School of Health and Social
Studies, University of Warwick; Jo Brett, Research Fellow, Royal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick; Maggie Redshaw,
Senior Research Fellow, National Perinatal Epidemiology Unit, University of Oxford; Karen Hamilton, Senior Research Associate, National Perinatal Epidemiology Unit, University of
Oxford; Mary Newburn, Head of Policy Research, National Childbirth Trust; Nicola Jones, previously Coordinator of Warwickshire Pre-Term Support Group, former NCT National
Specialist Worker on Prematurity, member of BLISS; Lesley Taylor, Breastfeeding Counsellor Tutor and Specialist Coordinator for Premature Birth, National Childbirth Trust.
The Parents of Premature Babies (POPPY) project was supported by an advisory group whose membership consisted of the following people: Dr. C. Bennett, Neonatal
Consultant, John Radcliffe Hospital NHS Trust, Oxford; Professor P. Brocklehurst (Chair), Professor of Perinatal Epidemiology and Director of the National Perinatal
Epidemiology Unit (NPEU) at the University of Oxford; Professor D. Bick, Centre for Research in Midwifery and Childbirth, Thames Valley University; Dr. J. Hawthorne,
Pychologist, The Brazelton Centre, Cambridge University Hospitals NHS Trust; Professor N. Crichton, Professor of Medical Statistics, South Bank University; Mrs. P. Goodger,
Senior Health Visitor, Oxford; Dr. G. Gyte, Research Associate, Cochrane Pregnancy and Childbirth Group; Dr. M. Harvey, Senior Lecturer, Birmingham City University; Dr.
Y. Richens, Consultant Midwife, University College of London Hospital; and C. Pimm, BLISS—the premature baby charity representative. The searches for this review were
conducted by P. Miller, Senior Information Specialist, Royal College of Physicians, London. The POPPY Project was funded by the Big Lottery.
Address correspondence to Dr. Sophie Staniszewska, RCN Research Institute, School of Health & Social Studies, University of Warwick, Coventry CV4 7AL,
sophie.staniszewska@warwick.ac.uk

Accepted 9 February 2012
Copyright ©2012 Sigma Theta Tau International
doi: 10.1111/j.1741-6787.2012.00253.x

                                                                                          Worldviews on Evidence-Based Nursing r Fourth Quarter 2012 243
POPPY Model for Neonatal Units

                   INTRODUCTION                                      A range of models of family-centred care has devel-
                                                                 oped in relation to neonatal and children’s care, many
T    he concept of family-centred care has advanced in re-
     cent years and become recognised internationally, al-
though its implementation in children’s care and in neona-
                                                                 developed in the United States (Saunders et al. 2003;
                                                                 Mikkelsen & Frederiksen 2011). A key study undertaken
                                                                 by Dunn et al. (2006) developed the Family-Centred Care
tology has been variable. The underlying philosophy puts
                                                                 map (FCC) which identified potentially better practices
parents and the family at the centre of health care and
                                                                 within an American setting and describing key stages in a
promotes “individualised, flexible care,” underpinned by
                                                                 parents experience—pre-admission, golden hours, acute,
appropriate information, support, and effective commu-
                                                                 growing stronger, breathing/feeding/growing, transition to
nication. Parents and their families are placed “at the
                                                                 home and post-discharge. The FCC map drew on a range
centre of woman-focused, family-centred services” (Scot-
                                                                 of information and evidence, professional perspectives, re-
tish Executive 2001; Department of Health 2004; NHS
                                                                 search literature, and some parental input. The developers
Scotland 2005; Welsh Assembly 2005; Department of
                                                                 of the FCC map acknowledge that whereas family-centred
Health 2007). The focus of family-centred care resonates
                                                                 care has been implemented and investigated in the past
with many policy initiatives that promote patient-led
                                                                 several decades, investigators have only recently begun to
health care and encourage health professionals to “step into
                                                                 research systematically for the evidence base for practices
the parents’ shoes” and consider how parents feel when
                                                                 (Dunn et al. 2006). In addition, although the FCC map
a preterm or sick infant is born. Implementing family-
                                                                 included parents, the extent of their collaborative involve-
centred care includes introducing facilities and practices
                                                                 ment, as defined by INVOLVE (2007) in the synthesis and
that support parents all the way through their experience in
                                                                 development of the model is not entirely clear.
the neonatal unit and after discharge. Although these pol-
                                                                     Despite some of the challenges in defining, conceptual-
icy initiatives provide a useful context for the implementa-
                                                                 ising, and implementing family-centred care, studies have
tion of the family-centred care, and nurses seem to support
                                                                 identified a range of benefits, including lower infant be-
the philosophy more generally, there is evidence to sug-
                                                                 havioural stress cues, shorter lengths of stay, fewer read-
gest that health professionals can have difficulty integrat-
                                                                 missions, enhanced breastfeeding (Forsythe 1998; Tessier
ing it into their own practice (Bruce et al. 2002; Petersen et
                                                                 et al. 1998; Galvin et al. 2000; Van Riper et al. 2001;
al. 2004; Palladelis et al. 2005; Mikkelsen & Frederiksen
                                                                 Furman et al. 2002; Feldman et al. 2003; Preyde & Ardal
2011).
                                                                 2003; Byers et al. 2006; Johnson et al. 2006; Melnyk
    Family-centred care has been identified as a complex
                                                                 et al. 2004; Melnyk et al. 2006; Cooper et al. 2007), and
concept, which has only reached partial maturity in its de-
                                                                 greater staff satisfaction, as well as a positive impact on
velopment. Family-centred care can be viewed in a num-
                                                                 the stress experienced, comfort level, and parenting confi-
ber of ways (Mikkelsen & Frederiksen 2011) including as
                                                                 dence among NICU parents and families (Van Riper 2001;
a paradigm (Hall 2007), a philosophy (Malinsky 2005), a
                                                                 Copper et al. 2007). In addition, there is evidence that fam-
model of care (Shields et al. 2007), or as a practice theory
                                                                 ily participation in infant care can lead to a better family
(Hutchfield 1999). Although family-centred care is based
                                                                 experience with health care (Galvin et al. 2000; Feldman
in western culture, other studies have identified key ele-
                                                                 et al. 2003). Ultimately, family-centred care may help to
ments of the concept in less developed country contexts
                                                                 develop the relationship between an infant and the fam-
(Shields & Nixon 2004). There are a number of key princi-
                                                                 ily and result in improved long-term outcomes for both
ples to family-centred care: including parents and families
                                                                 (Feldman et al. 2003).
being treated with dignity and respect; parents having a
right to know about their infant’s care and condition and                        ORIGINS OF POPPY
updated information should be available to them, health-
                                                                 The POPPY project (Parents of Premature Babies Project)
care providers prioritising open communication and shar-
                                                                 emerged from a group of parents who felt that, while their
ing information with parents and families in ways that are
                                                                 babies had received good quality clinical care, they them-
affirming and useful; information-giving being tailored ac-
                                                                 selves had poor experiences of the neonatal unit. In many
cording to parents’ individual preferences for detail and
                                                                 respects they felt they had received “non-family–centred
their changing needs; parents and family members being
                                                                 care,” resonating with studies that have identified diffi-
encouraged to participate in their infant’s care with the
                                                                 culties with properly implementing family-centred care in
aim of them developing a sense of confidence, control,
                                                                 practice (Bruce et al. 2002; Petersen et al. 2004; Palladelis
and growing independence; and practical and emotional
                                                                 et al. 2005; Mikkelsen & Frederiksen 2011).
support being provided continuously, throughout the care
                                                                    These challenges suggested that it was important to re-
pathway (Johnson 2000).
                                                                 examine family-centred care from the parent perspective.

244 Fourth Quarter 2012 r Worldviews on Evidence-Based Nursing
POPPY Model for Neonatal Units

With the collaborative involvement of parents from the                 DATA COLLECTION AND ANALYSIS
start of POPPY, the key areas of family-centred care were
                                                                 Full methods and results for the POPPY systematic re-
identified as communication, information, and support
                                                                 view and the POPPY qualitative study are reported else-
(Staniszewska et al. 2007). From this base a research pro-
                                                                 where (Staniszewska et al. 2007; Redshaw et al. 2010; Brett
posal emerged which focused on these three core aspects
                                                                 et al. 2011). Brief methods and limitations of these stud-
of parents’ experiences. The POPPY project conceptualised
                                                                 ies are described below to contextualise the POPPY model
family-centred care as a philosophy of care, with key prin-
                                                                 development.
ciples and as a model of care with core components, which
can be implemented. Parents also recognised the impor-
tance of synthesising data about parental experiences with       POPPY Systematic Review
research evidence from a systematic review that identified       Systematic searches were undertaken for the period of Jan-
effective interventions.                                         uary 1980–October 2009 in the following databases: Med-
                                                                 line, Embase, PsychINFO, the Cochrane library, CINHAL,
Aims                                                             MIDIRS, HMIC, and HELMIS. Grey literature was sought
First, to develop the POPPY model of family-centred care,        and the Neonatal Network Journal, Journal of Neonatal Nurs-
including the POPPY philosophy, principles, and indica-          ing and Journal of Obstetric, Gynecologic, and Neonatal Nurs-
tors for implementation, from the synthesis of data from         ing were hand searched. A non-quantitative synthesis was
the POPPY systematic review and POPPY qualitative study.         conducted based on the extracted data. Seventy-two papers
   Second, to work collaboratively with parents at all stages    were included. The scope of this review was very broad,
to ensure the relevance, appropriateness, and acceptability      and the searches were therefore developed to be inclu-
of the POPPY model of family-centred care.                       sive. This resulted in the search being sensitive, but not
                                                                 specific. Furthermore, this systematic review included in-
                                                                 tervention studies and non-intervention studies. Although
                        DESIGN                                   this review identified a range of interventions that can
The study used a collaborative approach with parents in-         help parents, certain groups were under-represented in
volved in developing the POPPY model of family-centred           the study samples: these included minority ethnic, disad-
care at each stage. Evidence from different phases of the        vantaged groups, and young parents.
study was synthesised to identify the philosophy and prin-
ciples of family-centred care and identify the key stages and    POPPY Qualitative Study
components of care. The design of the study is summarised        Ethical approval was sought and granted for the qualitative
in Figure 1.                                                     study through the UK National Research Ethics Service.
                                                                 This study reports on data from 42 semi-structured in-
                                                                 terviews with mothers and four focus groups with fathers
                                                                 were conducted with mothers who have had a preterm in-
                                                                 fant at 1–3 months after the infant was discharged from
                                                                 the neonatal unit. Interviews and focus groups were care-
                                                                 fully set up to ensure parents were appropriately supported
                                                                 and could stop the discussion at any time, if they became
                                                                 upset. Purposeful sampling was used to maximise variabil-
                                                                 ity in the sample of mothers from seven neonatal units in
                                                                 the England and Scotland. The “framework” analysis was
                                                                 conducted to identify and group themes and coding, classi-
                                                                 fying, and developing categories (Ritchie & Spencer 1994).
                                                                 Emerging themes (or categories) were developed by draw-
                                                                 ing out key themes and reviewing the inter-relationships
                                                                 between these emerging themes, to build a “story” (Brett
                                                                 et al. 2011). A key limitation was the difficulty experienced
                                                                 in recruiting individuals from minority ethnic communi-
                                                                 ties and harder to reach groups such as teenagers. The
                                                                 third component of POPPY reported current policy, fa-
                                                                 cilities, and practice in UK neonatal units that related to
Figure 1. Development of the POPPY model of care.                parents and family-centred care (Redshaw et al. 2010).

                                                                Worldviews on Evidence-Based Nursing r Fourth Quarter 2012 245
POPPY Model for Neonatal Units

           SYNTHESIS AND RESULTS
The POPPY model of family-centred care was developed in
a number of key steps with collaborative parental involve-
ment embedded throughout. Although development of the
model is presented in steps, its development was iterative
and not always a linear process. Each step is described
below (see Figure 1).

Step 1: POPPY Systematic Review
Interventions that are effective in enhancing the parent ex-
perience in relation to communication, information, and
support for which there was evidence were identified, as
described above (Brett et al. 2011). The importance of a
strong evidence base for the POPPY model of care was
particularly important in light of Dunn et al.’s (2006)
recognition of the need to enhance the evidence base of
family-centred care models and practices. Parents read the
POPPY systematic review and were involved in discussions         Figure 2. POPPY philosophy.
about the acceptability, relevance, and appropriateness of
the identified interventions.
                                                                 Step 4: Identifying Key Stages of the POPPY Model of
Step 2: POPPY Qualitative Study                                  Care
Interviews and focus groups with parents, as described           The findings from steps 1 and 2, underpinned by the phi-
above, produced a rich and complex data set of experi-           losophy and principles developed in step 3, were drawn
ences. POPPY parents read anonymised transcripts and             together in discussion with parents. In this discussion it
participated in research team discussions. Where parent          became apparent that there were seven key stages from the
experiences further supported interventions identified in        parent perspective, which reflected their journey through
step 1 these data were added to the same themes within the       the neonatal unit, underpinned by communication, infor-
emerging model. Parent experiences data that identified          mation, and support (see Figure 3).
good practice, but which had not always been identified as
a tested intervention in the systematic review, were con-        Step 5: Populating the POPPY Model of Care
sidered as an important form of evidence and included in         Data from steps 1 and 2 were then used to populate the
the developing model (Staniszewska et al. 2010).                 model of care once the seven key stages were agreed. Each
                                                                 of the stages of the POPPY model of care is presented below
                                                                 alongside extracts of the POPPY qualitative data. Evidence
Step 3: Identifying the Philosophy and Principles of             from the systematic review is included and referenced from
the POPPY Model of Care                                          the original papers. A summary model is presented at the
The role and identify of parents intrinsically involves pro-     end of this section.
tecting and nurturing the infant, but many POPPY data                Stage 1. Before admission to the neonatal unit. The
identified parent experiences were often associated with         time before admission to the neonatal unit can be an im-
separation, marginalisation, lack of responsibility, and loss    portant period of preparation for parents and for starting
of nurturing and protective role. The POPPY parents were         to build knowledge, confidence, and understanding which
important in identifying the core philosophy: that the baby      enable realistic expectations. For example, a tour of the
and parents should be at the core of family-centred care,        neonatal unit, including virtual tours sometimes available
surrounded by medical and nursing staff, and then an outer       on Web sites or a consultation with the neonatal team be-
layer of unit and trust organisation, expressed in Figure 2.     fore admission is effective in preparing parents (Huckaby
   To complement the POPPY philosophy, the principles            1999; Auckland District Health Board 2009).
underpinning the POPPY model of care were drawn from               The consultant, she was absolutely brilliant in hospital, you know,
the evidence, advisory group discussion with researchers,          sat down and explained what was going on, why I was going to
healthcare professionals, and parents (see Table 1).               have the infant early. So everything was explained that way. . ..

246 Fourth Quarter 2012 r Worldviews on Evidence-Based Nursing
POPPY Model for Neonatal Units

TABLE 1
POPPY principles
r Treat parents with dignity and respect and develop a relationship based on trust.
r Involve parents in all aspects of their infant’s care.
r Be aware of parents’ needs, the emotional impact of preterm birth and individual differences in parental responses and needs.
r Recognise critical steps for parents on the care pathway.
r Recognise and value the roles of parents, siblings and other family members.
r Provide sensitive and compassionate interaction.
r Provide practical help with infant care and parent interaction, including identification of behavioural cues.
r Provide psychosocial support for parents.
r Promote parenting skills in caring for an interacting with their infant.
r Maximise opportunities for communication with parents and parent groups.
r Support mothers’ ability to nurture their baby by expressing breast milk and breastfeeding.
r Provide appropriate family-friendly facilities.

Figure 3. POPPY model of family-centred care.

    Parents suggested that this was a good time for neona-                  and machines bleeping, it’s a scary time and it’s good to know
tal units to record information, such as parent and family                  exactly what each tube was for and why.
details and telephone numbers and preferences for exam-
ple, in feeding and kangaroo care. They also proposed that                  Emotional support was also important for parents who
this was a good time for parents to receive practical de-                did not see their infant immediately after the birth:
tails about the neonatal unit, such as contact and access                   That was something that could maybe have been done better, in
information and the possibility of transfer to another more                 that somebody could have maybe stayed with me at that point,
specialist unit.                                                            because it was midnight, it was dark anyway. . .. I was just on my
                                                                            own and I didn’t actually know what had happened to the boys,
   Stage 2. Admission. The second phase of the POPPY                        apart from the fact they were in intensive care.
model of family-centred care focuses on admission to the
neonatal unit. It may be the parent’s first visit and intro-                It was important for many parents to be able to be to-
ductions to staff and collection of key information from                 gether and enabling both to stay overnight was valuable:
parents are important. This can be a very difficult time for                I only stayed one night, and it was just because I felt totally
parents, particularly in relation to seeing their infant for                horrible. They said my partner wasn’t allowed to stay.
the first time:
   It’s just peace of mind really, reassurance. You have not been in        Stage 3. Early days in the neonatal unit. Provid-
   that situation before and seeing the infant with tubes up his nose    ing appropriate orientation to the neonatal unit enabled

                                                                        Worldviews on Evidence-Based Nursing r Fourth Quarter 2012 247
POPPY Model for Neonatal Units

parents to familiarise themselves with the environment                        1995) to enable them to develop experience and knowl-
and feel comfortable:                                                         edge of their infant’s behavioural cues (Szajnberg et al.
   In intensive care it was so, you know you had so much care, with           1987; Culp et al. 1989; Hawthorne 2005). A small number
   the nurses all the time, but in special care they . . . left you to deal   of units also have a webcam or video link available for par-
   with it a bit more which was scary to begin with, but then you             ents so they can feel close to their infant, are reassured and
   know, as time went on you could see what was happening and                 the developing parent-infant relationship is supported:
   what you had to do for him as well.
                                                                                 So when you’re at home and you’re worried, but you don’t have
   As part of orientation process parents appreciated an                         the courage to pick up the phone, just going on and seeing her. It
introduction to staff and to parent-friendly information                         would probably help with breastfeeding as well, for expressing. I
                                                                                 think it is a thing that they need to look at.
about the neonatal unit and its policies.
   As soon as you walked in the nurse that was working came straight             Opportunities for parents to participate in ward round
   over to you and introduced herself . . . for the first time . . . she      discussions about the infant’s progress and access to med-
   went “Hi, I’m so and so and I’m caring for [name] today, this is           ical notes and charts have been found to be important
   what’s been happening.” So that communication was excellent,               (Penticuff & Arheart 2005), as have recorded consulta-
   the initial first couple of weeks.
                                                                              tions, which can improve parents’ knowledge (Koh &
   Studies show that parents find it helpful to understand                    Jarvis 1998). Parents in the POPPY study reported mixed
standardised unit policies on, for example, the promotion                     experiences:
of breast feeding, kangaroo care, and infant massage (Meier                      Information in the ward round was good, the fact that you could
et al. 1993; Elliott & Reimer 1998; White et al. 2000). An                       stay in for that and get to hear what all the doctors said, that was
information folder for parents to collate the different types                    good as well I think.
of information they may be given can be useful (Costello                         Parents also mentioned BabyLink (Gray et al. 2000;
et al. 1996; Gannon 2000) and unit booklets or specific                       Freer et al. 2005), a Web site where their infant’s notes
information leaflets can help orientate parents to the unit                   or progress charts can be placed for parents to access when
and make their experience more manageable:                                    they are at home. The use of notes and diaries shared
   There was a pack given to us in the early days and I can remember          by staff and parents facilitates communication and like
   when I was in the hospital, you know, after I sort of got over the         BabyLink, enables them to feel in touch with their infant’s
   initial bit feeling a bit better, I was able to go through that in my      care and progress. The option to be involved when their
   own time, there’s quite a good, quite a thick booklet with just all
   the information about the Unit and different things and I found
                                                                              infant is undergoing medical procedures was important for
   that quite good because it meant that I probably wasn’t sort of            some parents:
   being bombarded by people telling me things and I was able to                 Only I didn’t know all the time what was happening and I would
   pick up on, you know, because I didn’t feel that actually, it sounds          sometimes go up and he would have been for a scan and I didn’t
   ridiculous now, but I didn’t feel able to face the whole thing at             know he was going. I understand if it’s an emergency but if it’s a
   once.                                                                         routine thing I would have liked to have known beforehand and I
                                                                                 would have taken him over myself.
   During the early days in the unit parents begin to get to
know their infant and this interaction is particularly impor-                   Infant feeding was very important for many parents and
tant in developing this fundamental relationship and their                    mothers needed support and help in expressing breastmilk
parenting role. Healthcare professionals have an important                    and breastfeeding their infant:
role in encouraging and supporting parents to participate                        The nursing staff, you know, took care that because it was, at first,
in providing care for their infant, and in understanding                         it was hard doing the breastfeeding, trying to get her comfortable,
and responding appropriately to their infant’s cues (Meyer                       but they were always there, they were supporting her, they were
et al. 1994; Ali et al. 2003; Browne & Talmi 2005;                               showing us.
Karesen et al. 2006; Melnyk et al. 2006). This did not                           Stage 4. Growing and developing. Parents are likely
always happen for parents in the POPPY study:                                 to spend significant amounts of time in the neonatal unit
   I kept thinking everywhere I was walking there was skin to skin            as their infant grows and develops and direct involvement
   posters and there was leaflets but these . . . they weren’t wanting        in their infant’s care is increasingly important during this
   me to take him out and I thought but I want to hold him and take           phase. Parents need to be supported to continue the pro-
   him out, that’s what he needs, he doesn’t . . . you know he’s just
   lying in there and I want to hold him.
                                                                              cess of building the relationship with their infant and de-
                                                                              veloping skills of monitoring, understanding and respond-
  Parents can also be supported by the use of infant be-                      ing to their infant’s cues, learning as these change over
havioural assessment instruments such as the Brazelton                        time, and about the ways in which their baby is devel-
Neurobehavioral Assessment Scale (Brazelton & Nugent                          oping. Staff members have a vital role in supporting this

248 Fourth Quarter 2012 r Worldviews on Evidence-Based Nursing
POPPY Model for Neonatal Units

process and enabling parents to gradually increase their                        Stage 6. Preparing for discharge and the transition to
caring responsibilities:                                                    home. Preparation for discharge and a satisfactory tran-
  It takes a lot to sort of figure out the routines of SCBU and I think     sition to home, with which parents feel comfortable and
  once you get to that point the nurses were quite good at explaining       during which babies are cared for appropriately, is a vi-
  [name’s] care to us, sort of initiating us to how to do it ourselves      tal part of the parental experience (Costello & Chapman
  and things like that. I think that was quite helpful, we could learn      1998; Ortenstrand et al. 2001; Bennett & Sheridan 2005;
  to take a part in his care.
                                                                            Broedsgaard & Wagner 2005). It is important for the
   Support schemes for parents or peer group support can                    neonatal team to collaborate with parents is setting a target
be effective and have psychosocial and well-being benefits,                 date for discharge and to provide clear, consistent infor-
as well as information sharing (Roman et al. 1995; Hurst                    mation about the discharge process:
2006; Bracht et al. 1998; Pearson & Andersen 2001; Preyde                      My partner was constantly booking days off work to come and get
& Ardal 2003; Buarque et al. 2006). Parents in the POPPY                       us and the doctor would turn up and say “Oh no, he is not going
                                                                               home today” . . . so his paternity leave was wasted, probably 7 or
study reported that they benefited from being able to talk                     8 days was wasted.
to other parents in the same situation and valued these
interactions:
                                                                              It is also important to develop detailed care plans with
  A lot of the stuff we got from like talking through with parents,         additional information for parents to refer to at home:
  especially things like . . . like certain ways babies behave with them
  being premature, like certain phases they did, certain . . . we’d be         All of a sudden it was oh you are going home . . . we didn’t really
  talking about them because I can remember the one time saying                know what we were doing, where we were doing it or what we
  the infant keeps crossing his eyes over and you’d mention that to            should be doing, it was very strange.
  a few nurses and nobody said anything and then it was talking to
  other mums and dads that they’d say ‘Oh yeah he does that’ and               Parents intimated that the option of overnight stays with
  I’ve been told that such and such and then that puts your mind at
                                                                            the infant for one or both parents was an important element
  rest.
                                                                            in the transition to home. Having complete responsibility
   Peer support was particularly important for parents who                  for the care of their infant before leaving the unit boosts
did not have support from extended family or friends in                     parenting confidence:
the local area:                                                                Once I was transferred across to [transitional care] I was a lot
                                                                               happier because as I say, the girls were with me and I could see
  It’s awful going through having a premature infant and all the
                                                                               you know, what was happening and I was caring for them so it was
  rest of it anyway but the fact that you’ve got no family, friends,
                                                                               more, it was easier for me to cope because that’s what I expected.
  not even any of your clothes, all of that makes it a hundred times
  worse.
                                                                               Stage 7. At home. The transition home is often diffi-
   Stage 5. Transfers between different levels and different                cult for parents, most of who continue to need support and
units. Transfers between different levels of care within                    information during this new phase where responsibility for
one hospital or to another hospital can be a difficult time                 the care of their infant has become theirs entirely:
for parents, particularly when they have become familiar
                                                                               Yeah you are a bit abandoned because you’ve asked that many
with a particular neonatal unit. Preparation of parents for                    questions in there every day and you’ve had people looking after
transfers to other units was critical to those in the POPPY                    him every day, doing his temperature.
study, principally in relation to unit introduction and ori-
entation, policies and practices and provision of continuing                    Studies have shown how home support programmes
emotional support:                                                          reduce maternal stress and improve mother–infant inter-
  Nobody actually sat down and said well this is the difference in          action (Barrera et al. 1986; Resnick et al. 1988; Spiker
  special care, this is what will happen in here compared to there          et al. 1993; Klebanov et al. 2001). The importance of conti-
  . . . and basically you just felt you were left to get on with it.        nuity of care means that parents value visits from outreach
  He was born . . . went into special care here and that was fine so
                                                                            or unit-home liaison neonatal nurses (Langley 1999) and
  they took us round the special care here, we met everybody that           POPPY parents appreciated any contact with the neona-
  nursed him and that was fine, you know I was completely settled           tal unit or with a nurse with specialist knowledge and
  then that we were going there. So it was a bit of a shock then            expertise:
  on the Friday to be told you’re going on a plane and it’s going
  to be today and then they came back and said . . . a few minutes             I think the support on discharge is really good. I do. I think having
  later they said “it’ll be lunch time” which this was about 10:15 by          the community liaison nurse is invaluable.
  this time, I was like. . . I’ve got to go home, pack a bag and go to
  [place], it was . . . that was a bit of a shock.                             After care, I’d say for the first week you feel really alone.

                                                                           Worldviews on Evidence-Based Nursing r Fourth Quarter 2012 249
POPPY Model for Neonatal Units

      Planned

      Unplanned

Figure 4. POPPY model of family-centred care.

   Peer parental support and access to neonatal unit sup-             Step 6: Identifying Indicators of Family-Centred Care
port groups or community groups was also identified as                Drawing on POPPY findings from the neonatal unit survey
extremely valuable:                                                   (Redshaw et al. 2010), it was possible to identify indica-
   My health visitor found out there was a premature infant support   tors for the implementation of family-centred care, which
   group afterwards, you know, that met in [name of town] once a      neonatal units could use to audit their activities or develop
   month and I actually found that very helpful.                      a more family-centred care model and practice. These indi-
                                                                      cators provide some insight into whether the philosophy,
                                                                      principles, and components of the POPPY model are be-
   So it’s really valuable to have people who have had the same       ing implemented. The indicators require further testing to
   experience because you miss out on so many things that people      assess their utility in effectively measuring POPPY imple-
   accept as normal.
                                                                      mentation (see Table 2).

   A summary of the seven stages of the POPPY model                   Step 7: Initial Testing
of care capturing key aspects for parents is presented in             The components of the POPPY model of family-centred
Figure 4.                                                             care have undergone some informal initial testing to

250 Fourth Quarter 2012 r Worldviews on Evidence-Based Nursing
POPPY Model for Neonatal Units

TABLE 2
POPPY indicators of family-centred care for neonatal units
Philosophy of care and vision
r Unit policies which emphasise "partnership working" with parents and families.
r Openness and involvement shown in engaging with fathers, partners, and families.
r Access to written information and opportunities for discussion.
r Supportive handover of responsibility for care.
Organisational features
r Open visiting, that is unrestricted access to the neonatal intensive care unit.
r The development of specialist roles funded and/or organised by the neonatal unit (such as breastfeeding and bereavement support,
   and neonatal outreach).
Specific policies on:
r Introduction and orientation to the unit and levels of care for parents and families.
r Education for parents, that is infant care, developmental and behavioural cues.
r Supporting parental contact with infant including fathers and partners and the availability of skin-to-skin "kangaroo" care.
r Information exchange with parents. Examples of good practice include parent folders, parent update meetings, attendance at ward
   rounds, shared infant-logs or diaries.
r Ensuring policy implementation and consistency.
r Preparation and planning for discharge.
r Availability and use of staff in specialist roles (such as counselling, breastfeeding support, developmental care).
r Continuity of care after going home (home support programme).
Facilities
r A transitional care facility.
r Care areas in which six or fewer infants are cared for.
r Some single/double cubicles in which one or two infants can be cared for.
r A parents’ sitting room on or adjacent to the neonatal unit.
r A facility for parents to make snacks and hot drinks.
r A play-area or room for other children in the family.
r Overnight rooms (with ensuite facilities) for parents, appropriate in number for the population served.

identify acceptable content and face validity with parents,            issues, that includes staffing, priorities in commissioning,
professionals, and neonatal units who received summaries               the culture of maternity services, including neonatal units,
of the study, which suggests POPPY has relevance and                   the availability of resources, and the need for long-term
utility for neonatal units. The next phase of POPPY will               commitment throughout the services providing care for
involve a pilot implementation study to explore the effec-             babies and their families. The parents who identified the
tiveness of POPPY indicators as providing a valid measure              need for POPPY experienced the consequences of poor
of implementation and to better understand the most ap-                implementation and their experiences demonstrated the
propriate context and method for facilitating the POPPY                provision of non-family-centred care, which had a sig-
model of family-centred care into practice (Rycroft-Malone             nificant negative impact on them and their families. The
et al. 2004).                                                          POPPY Project examined family-centred care afresh, with
                                                                       the aim of understanding what parents want from this ap-
                                                                       proach and identifying family-centred practices that are
       DISCUSSION AND CONCLUSIONS
                                                                       supported by robust research evidence. Parental involve-
Family-centred care has evolved as a key concept in chil-              ment from the outset in the form of strong collaborative
dren’s care and in neonatal services over the last few                 parental involvement was critical in developing a new
decades, with its aim of placing parents and the family                model of care, which was relevant, appropriate, and ac-
at the centre of health care and promoting individualised,             ceptable for parents, as well as based on robust research
flexible care. Evidence suggests it enables a better par-              evidence. Such collaborative involvement involves parents
ent experience, with better outcomes for parents and in-               as research partners, rather than as individuals who might
fants. Despite the focus placed on family-centred care, its            be consulted occasionally or as individuals who are sub-
implementation has proved to be challenging (Mikkelsen                 jects of research, providing data on experiences (INVOLVE
& Frederiksen 2011). Although the reasons for this are                 2012). Although a range of models of family-centred care
not entirely clear explanations may include organisational             have been developed, strong parental collaboration of this

                                                                     Worldviews on Evidence-Based Nursing r Fourth Quarter 2012 251
POPPY Model for Neonatal Units

type does not appear to have been a key feature. Com-            tribute to neonatal services in any country becoming more
parison between POPPY and other models such as the               family-centred through more effectively addressing the ex-
FCC map (Dunn et al. 2006) shows some similarities and           pectations and needs of parents, although providing high
some differences. The clear evidence base underpinning           quality clinical care for their infants. In this way, high qual-
POPPY is one such difference, drawing on extensive qual-         ity parent-centred services for families, based on clinical,
itative data and systematic review evidence, thus meeting        economic and patient-based evidence (Staniszewska et al.
Dunn et al.’s (2006) challenge of demonstrating a clear ev-      2010) will become accepted healthcare practice.
idence base for family-centred care practice, which has not
been common practice in this area. The components of the         References
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