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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
Title
Parents’ and health professionals’ views of collaboration in the
management of childhood long-term conditions
Authors
Dr Joanna Smith, Associate Professor Children’s Nursing, School of Healthcare,
Baines Wing, University of Leeds, Leeds e-mail: j.e.smith1@leeds.ac.uk
Dr Sarah Kendal, Independent!Mental Health Nurse!Researcher
sarah.kendal.uk@gmail.com
Key Words
Long-term conditions; Childhood; Family-centered care; Collaboration
Highlights
•Patient-centered and family-centered care are poorly defined concepts and not
routinely embedded into every day practice;
•Effective parent-health professional collaboration may result in improved
outcomes for children and their families;
•The nature of the parent-health professional relationship is key to developing
positive collaborative practice;
•Families and health professionals differ in their expectations of strategies to
work collaboratively.
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CITATION: Joanna Smith and Sarah Kendal, ‘Parents’ and Health Professionals’ Views of
Collaboration in the Management of Childhood Long-Term Conditions’, Journal of
Pediatric Nursing, 43 (2018), 36–44 <https://doi.org/10.1016/j.pedn.2018.08.011>.
AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
Abstract
Purpose:
To explore how parents and health professionals view the concept and practice of
collaboration in the management of childhood long-term conditions.
Designs and Methods
A qualitative research approach was adopted; sixteen parents and six health
professionals participated in either individual or group interviews. Data analysis was
underpinned by the Framework approach and involved an iterative process of reading
the transcribed data, identifying and refining key themes until a coherent picture
emerged.
Results
Two main concepts were identified: expectations of collaboration and mechanisms for
collaboration. Health professionals’ expectations of collaborative practice were
influenced by their knowledge, experience and relative objectivity. They used
relationship building with families as a key strategy for collaboration. Parents’
expectations of collaboration varied and appeared to be influenced by their experience
of living with their child’s condition. Parents’ needs were often unmet, particularly in
relation to support with coordinating or accessing care on behalf of their child.
Parents’ strategies included resilience, assertiveness, determination and battling for
what they needed.
Conclusion
Parents and professionals valued collaboration as a concept but differed in their
expectations of collaborative practice and adopted different mechanisms to foster
meaningful collaboration. A better understanding of the unique needs and experiences
of parents of a child with a long-term condition is key to developing positive
collaborative practice.
Practice Implications
Collaborative practice could be enhanced by health professionals’ being more
responsive to the full range of parent support needs, and being more pro-active about
helping them work with the complexities of care systems."
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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
Current health policies within westernised societies promote models of service and
care delivery based on person-centeredness (Moore et al., 2017; Santana et al.,
2018; Wolf et al., 2018). Person-centered care prioritises patient need over service
needs and promotes a collaborative approach in the way health professionals
engage with, and involve, patients in care and care decisions (International Alliance
of Patients' Organizations, 2007). The conceptualisation of care that is
collaborative in nature is associated with a range of models and frameworks
including: person-centered care (Moore et al., 2017; Starfield, 2011; Wolf et al.,
2018), patient-centered care (Fox, & Reeves, 2015; Kitson et al., 2013) family-
centered care (Coyne, 2015; Shields at al., 2012), child-centered care (Carter et al.,
2014: Ford et al., 2018), negotiated care (Polaschek, 2003) and shared decision-
making (Land et al. 2017; Elwyn, & Charles, 2009). Despite a lack of conceptual
clarity and application in practice, collaborative approaches to practice have the
potential to improve patient or family outcomes by valuing and incorporating their
experiences and expertise into care and care decisions (Fix et al., 2018; Grocott, &
McSherry, 2018; Kitson et al., 2013; Kou, et al., 2012; Rathert, Wywich, & Boren,
2013; Shields et al., 2012; Smith, Swallow, & Coyne, 2015). Collaboration is
particularly salient in the context of people living with a long-term condition.
Managing long-term conditions depends on the negotiation of a mutually beneficial
partnership between patients (and families as appropriate) and health professionals
(Collins et al., 2007; Entwistle, 2009; Smith, Swallow, & Coyne, 2015) that fosters
collaborative decisions and care management (O’Grady, & Jadad, 2010; Kitson et
al., 2013).
Notwithstanding recent debates suggesting a model of child-centered care that
promotes the active agency of children in care decisions (Carter et al., 2014), when
the patient with a long-term condition is a child, the partnership with health
professionals is typically family-focused. While children have the right to be involved
in all decisions that affect them (United Nations, 1989), parents are likely to be
both advocates and the primary care giver for their child and will play a key role in
negotiating their child’s care (Boshoff et al., 2016). While the term parents will be
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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
used through this article, for some children the person with parental responsibilities,
such as grandparents or foster carers, may not be their biological parents. The
focus of this article is parent - professional collaboration in the context of the care
of children with long-term conditions. Drawing on the principles of family-centered
care a study exploring the collaborative care of children with long-term conditions
will be described and discussed.
Background
Family-centered care is widely espoused as a framework that promises care and
service delivery is practiced in way that support individuals within their family unit.
Core components of family-centered care are developing an effective relationship
with the family, with health professionals working collaboratively with them when
planning and delivering care (Kou et al., 2012). However, family-centered care has
been criticised as being somewhat aspirational because of poor conceptualisation of
the concept and poor implementation in practice (Coyne, 2015; Shields et al.,
2012; Smith, Swallow, & Coyne, 2015). Unsurprisingly, debates about the
widespread commitment to family-centered care and how it may usefully guide
practice ensue (Shields, 2015; Uniacke, Browne, & Shields, 2018). Furthermore,
findings from two systematic reviews on family-centered care have highlighted a
lack of evidence in terms of measurable outcomes to support its practice (Shields et
al., 2012; Watts et al., 2014). The Institute for Patient and Family-Centered Care’s
(IPFCC) has proposed a widely accepted definition of patient and family-centered
care as an ‘approach to the planning, delivery, and evaluation of health care that is
grounded in mutually beneficial partnerships among health care providers, patients,
and families’ (Johnson et al., 2008, page iv). The IPFCC definition is centered around
four core concepts:
•Dignity and Respect - health professionals listen to and value patient and family
perspectives and choices. Patient and family knowledge, values, beliefs and
cultural backgrounds are incorporated into the planning and delivery of care;
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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
•Information Sharing - health professionals communicate and share complete and
unbiased information with patients and families in ways that are affirming and
useful. Patients and families receive timely, complete, and accurate information
in order to effectively participate in care and decision- making;
•Participation - patients and families are encouraged and supported in
participating in care and decision-making at the level they choose;
•Collaboration - patients, families, health professionals, and hospital leaders
collaborate in policy and program development, implementation, and evaluation
of health care service design and in professional education, as well as in the
delivery of care (Johnson et al., 2008).
The IFPCC’s interpretation of collaboration is broadly consistent with that of
O’Grady and Jadad (2010), who define collaboration as:
‘A process of engagement in which health professionals and patients work
together...,to understand clinical issues and determine the best course of
action’ (O’Grady, & Jadad, 2010, page 1).
Thus, collaborative patient, child and family-centered care practice appear
inextricably linked. However, child and family-centered care has greater relevance
for child health practice because it moves beyond the care of the child by
considering the needs of the family (Carter et al., 2014; Kou et al., 2012).
In the context of working with children with long-term conditions and their families,
collaboration is particularly salient as these children are primarily cared for at home,
with parents taking responsibility for care decisions and delivering treatments
(Smith, Cheater, & Bekker, 2015a; Kish, Newcombe, & Haslam, 2018). Furthermore,
health professionals advocate working collaboratively with parents when deciding
the best cause of action when planning and managing the child’s condition (Smith et
al., 2015). Research focused on adult patients highlights that when collaboration
works well it can increase a patient’s involvement in care and treatment decisions,
resulting in improved treatment adherence and satisfaction and trust in working
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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
with health professionals (Dwamena et al., 2012; Johnson, Ford, & Abraham, 2010;
Melbourne et al., 2010; Westermann et al., 2013). Although, there is a paucity of
similar evidence in the child health setting (Shields et al., 2012), parents report
wide variations in the quality of parent - professional relationships, with some parent
perceiving that their expertise and contribution to care is not valued (Smith,
Cheater, & Bekker, 2015b; Swallow et al., 2013).
A collaborative approach to healthcare delivery offers the opportunity to harmonise
families’ and professionals’ viewpoints in order to shape healthcare interventions
that address patient priorities, and is essentially patient and family-centered (Collins
et al., 2007; O’Grady, & Jadad, 2010). However, collaborative care brings many
challenges, since health professionals and families may have widely varying
expectations, experiences, expertise, and motivation to work collaboratively (Moore
et al., 2017). Furthermore, collaborative practice will require health professionals to
shift from a paternalistic approach to care delivery to one where the differing
perspectives of parents and professionals are integrated, to improve a joint
understanding of the child’s condition that informs care planning and delivery (Smith
et al., 2015). A useful way to develop an understanding of collaborative practice is
to consider the position of each party, in this study how parents and health
professionals are involved in the collaborative process, as outlined in Figure 1
(O’Grady, & Jadad, 2010). Unlike reductionist models of care that are service and
task oriented, collaborative models are more likely to have an increased emphasis on
understanding individual or in the context of this study parent aspirations and
experiences, and to foster a mutual understanding between parents and health
professionals about illness management (Haidet et al, 2008; O’Grady, & Jadad,
2010). In the context of childhood long-term conditions it is likely that as parents
become skilled and experienced in providing care for their child they shift from a
passive to more active position when collaborating with health professionals.
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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
Figure 1: Positioning of collaborators (adapted from O’Grady & Jadad, 2010)
In summary, collaboration as a concept seems to be widely supported as a
component of family-centered care but there is a lack of clarity about what
collaborative practice means to parents and health professionals. Therefore, the aim
in this study was to explore how parents and health professionals view the concept
and practice of collaboration in the management of children with long-term
conditions. The specific objectives were to:
•Appraise the extent of a shared understanding of collaboration in the care of
children with long-term conditions between parents and professionals;
•Gain insights into parents’ perceptions and experiences of being involved in
care and care decisions;
•Gain insights into healthcare professionals’ perceptions and experiences of
involving parents in care and care decisions;
•Make recommendations to inform how health professionals could respond to
parent expectations to enhance collaborative practice in relation to the care
of children with long-term conditions."
Perspective
Heath professionals
position
Parents
position
Direction of
knowledge
Purpose
Paternalistic
Directive
Passive
One way:
Health professional –
parent/carer
Compliance of
patient
Autonomous
Receptive
Directive
One way:
Parent/carer - health
professional
Compliance of
heath
professional
Shared
decision-
making
Informative
Informative
Two way exchange
Equity in decision
making process
Collaborative
Supportive
Proactive
Building knowledge:
shared learning &
exchanging information
Optimal action
plan to improve
health
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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
Methods
Design and participants
A qualitative research design was adopted, with data collected from individual and
group interviews. A qualitative approach was appropriate because, first qualitative
methods are suitable for exploring areas of healthcare where evidence is limited.
Second, as the study aim was to explore the meaning of parent-professional
collaboration, an approach was needed that supported participants to share their
experiences and perceptions of collaboration.
Email and telephone calls were used to identify a sample of parents and health
professionals involved in the care of children with long-term conditions. Individuals
and parent support groups in the North of England were approached to access
parents, and professional contacts to target professionals with experience of
working with families where a child has a long-term condition. Some of the health
professionals were recruited from a Children’s Hospital through their global
communication systems. The sample consisted of 22 participants: 16 parents of a
child with a long-term condition and 6 health professionals.
Data Collection
Individual interviews were undertaken with six mothers of children with a long-term
condition and six health professionals by telephone or face-to-face at a location
convenient to the participant depending on their preference. An interview topic
guide was used that focused on inviting participants to share their experiences and
opinions of collaborative practice, developed from previous studies undertaken by
JS (Smith, Cheater, & Bekker, 2015a & b), outlined in Figure 2. In addition to the
individual interviews, facilitated discussions with a peer support group (seven
mothers and three fathers) run by and for families of children with Type 1 diabetes,
who had not participated in the individual interviews, were undertaken; the data
consisted of field notes recorded during and immediately after the discussion.
Working in groups of three to four participants, four sheets of paper were placed at
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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
each table. Each sheet had one of the four preliminary themes headings (Figure 3),
which were used to structure the discussion. Asking the blue-sky question (Figure
2) concluded the group discussion. As data analysis approached its final stage,
the group were also invited to comment on the core concepts (Figure 3), as way of
member checking to enhance the credibility of the findings (Birt et al., 2016).
Recorded telephone interviews were transcribed verbatim and field notes were
word-processed promptly while data could be easily recalled.
Figure 2: Topic Guide for interviewing
Data analysis
The Framework approach was used to analyse and identify themes within the data
(Spencer et al., 2014; Smith, & Firth, 2011). The analysis consisted of a series of
systematically applied stages, beginning with transcription of the recorded data and
field notes, and reading and re-reading of the transcribed data to enable the
researchers to become familiar with the data. Initially analysis was undertaken
independently; debating and challenging individual assumptions resulted in a shared
understanding of the data. This process culminated in developing a list of nine
‘categories’ from participants’ accounts, which was used to organise and sort all
1. Open question
What do you think being involved/ involving parents in care and care decisions means?
2. Guiding questions
How much do you feel you are involved/involve parents in the care of their /your child?
Can you explain how health professionals/you identify and listen to your /parents concerns?
Do you have/facilitate opportunities to ask questions? How does this happen?
How important do you feel it is for yourself/parents to contribute to care decisions?
What do you think are the advantages and disadvantages to parents being involved in care
and care decisions?
3. Blue sky question
In an ideal situation what do you think would help to ensure effective collaboration between
parents and health professionals?
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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
transcribed data. Once all data extracts were incorporated into the category list,
categories were reordered and grouped together into preliminary themes. At this
stage the parent support group was asked to discuss the preliminary themes (Figure
3), as previously described, and offered an opportunity to explore with the group
ways to enhance collaborative processes between parents and health professionals.
This was an essential stage in refining initial thoughts and resulted in the preliminary
themes being reviewed and refined. Finally, once a cohesive account was developed
consideration was given to how the themes interlinked, and how collaboration
operates in every-day practice, this resulted in the development of the core
concepts, the final stage of Framework approach (Spencer et al., 2014). Figure 3
illustrates the process of moving from content categories, derived from the
transcribed data, through to developing the core concepts. The parent group, as
previously described, confirmed the core concepts.
Figure 3: Illustration of the process of moving from categories to core concepts
Content categories
Preliminary themes
(presented to the
parent support group)
Final themes
Core concepts
Unsure
Doing my best
Working with complexity
Drawing on health
professional expertise
Expectations
about
collaborative
care
Dealing with health
professionals
Working with parents
Negotiating care
Uses condition and
treatment knowledge,
expertise and skills to
inform care decisions
Expectations
Parents concerns
Identifying needs
Strategies to manage
the situation
Support systems
Service focus verse
family focus care
Different priorities
Build collaborative
relationship
Understand and work
with parent expectations
Resilience
Mechanisms
for achieving
collaborative
care
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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
Ethics
Ethical approval for the study was gained from the School of Heath Sciences
research ethics committee, University of Huddersfield, United Kingdom (UK). In
order to contact health professionals, local research and development approval from
Leeds Teaching Hospital Trust, Leeds, UK was gained. Written consent was obtained
from participants prior to undertaking the interviews, and all data were anonymised.
Results
The sample included 16 parents of children with a long-term condition and six health
professionals (one health visitor, one paediatrician and four children’s nurses). Two
of the parents were also health professionals but shared their perspectives as
parents. Two of the health professionals were also academics. Three parents and
one health professional were male. The children and young people who were the
focus of the care had an age range of 7-20 years. Their conditions included: anxiety
disorder, hyperallergic condition, Type 1 diabetes, multiple disabilities and autism.
Analysis of the data highlighted differences between parent and health professional
expectations of collaboration and the mechanisms required to achieve collaborative
care in practice. Two core concepts and the associated themes that emerged from
the analysis are presented in Figure 4.
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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
Figure 4: Expectations of collaboration and mechanism to foster collaboration
To maintain anonymity when presenting data extracts, parent examples are labeled
‘P’ with facilitated discussion group data labeled ‘FDG’, and health professional
examples are labeled ‘HP’.
Expectations about collaborative care
Both parents and health professionals expected to collaborate in care but had
differing expectations and priorities. Parent narratives revealed they expected to
have access to and support from appropriately knowledgeable and experienced
health professionals. In the early stages of managing their child’s condition they
relied on professional support. However, the way health professionals communicated
information did not always meet parent’s needs. There was a common experience of
what parents in the facilitated discussion group called ‘information overload’.
Information overload was most marked following the initial shock and implications of
their child’s diagnosis, when parents heightened emotions hindered their ability to
process information or contribute effectively to care discussions. However, there
were similar accounts from parents who had developed knowledge and were gaining
expertise in managing their child’s care. All of the parents wanted expert guidance
from health professionals and were frustrated if they perceived this level of support
Core Concepts
Health professional - themes
Parent - themes
Expectations
about
collaborative
care
•Responsible to work collaboratively
•Working with parents in managing the
child’s conditions child
•Uses condition and treatment
knowledge, expertise and skills to
inform care decisions
•Drawing on health professional
expertise
•Valued and respected by health
professionals
•Good communication
Mechanisms
for achieving
collaborative
care
•Build collaborative relationships
•Understand and work with parent
expectations
•Build collaborative
relationships
•Resilience
•Using knowledge and
experience to negotiate care
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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
was not offered. Parents expected their concerns about their child to be taken
seriously and wanted the best outcomes for their child and family. The following
extract illustrates participants’ perceptions of communicating with health
professionals and drawing on their expertise:
‘It was me, putting my foot down and saying right, this is not
acceptable, this is not good enough, why is it up to me to tell you
what to put my son on? Why should, why do I tell you when he needs
more saline, when he goes on glucose, when he goes on insulin drips?
That’s not for me to decide, I shouldn’t be making those
decisions’ (P6).
In addition, for some parents the way in which health professionals communicated
and the lack of information shared was unhelpful. One parent whose older child was
receiving psychotherapy found the lack of communication from the service added to
her concerns for her child’s health and well-being:
‘I don’t need to know what happens (in the therapy sessions), but I do
need to know if (my child) is getting better or worse’ (P3).
Health professionals were oriented towards developing collaborative relationships
with parents and perceived they recognised the important contribution of parents
to their child’s care. Health professionals had empathy for parents, particularly in
complex conditions, where some professionals may not have parents’ depth of
knowledge of the condition, but perceived they actively promoted working with
parents in managing the child’s care. The following examples highlight health
professional views of their role in promoting collaborative care:
‘Part of my role is to empower the parents, the families, the patients,
to actually be managers of their own care... you have to almost let go,
you have to give them the tools to be able to do it themselves’ (HP1).
‘Parents and nurses bring two sets of expertise to the game. Parents
are the ones who know their children really well… Whereas nurses
come in with the theory, the skillset and the experience’ (HP2).
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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
‘It must get frightening when you feel you know more than the
experts’ (HP6).
Parent accounts revealed they perceived that they shouldered the long-term
responsibility of learning to manage their child’s condition. Parents described a
constant battle to access services, and assessments, diagnosis and treatment for
their child, and expected health professionals to value and appreciate their
commitment. Many perceived the entire process of living with their child’s condition,
and working with health professionals as unrelenting, exhausting and often
impacting on partner and family relationships. Where their child had a particularly
complex condition, poor communication between healthcare teams added additional
to pressure of negotiating care across multiple specialist services. However, health
professionals highlighted that they tried to understand and work with family’s
expectations. These contrasting views are highlighted in the following examples:
‘…. willing to fight but it is exhausting and you can’t fight all the time or
everything…. marriage of 17 years broke as spent all her energy on (child)…
each professional only looks at the condition (issues) relevant to them’ (P5).
‘We don’t recommend that children that are boys with haemophilia play
football. For a boy, that’s huge, that’s absolutely huge. So its about
tailoring the treatment to keep them safe so that they can do what they
want to do, within reason, and giving them the education, the skills and
the knowledge to understand’ (H4).
Across participant narratives, developing good parent-professional relationships was
an expectation of working collaboratively. While for both parents and professionals
effective communication was central to developing a good relationship, parents’
accounts highlighted that at times communication was not a two-way exchange.
Instead of being equal care partners they often felt judged and at times perceived
their contribution to care was not valued. Parents expressed frustration that their
knowledge and expertise were not valued, as highlighted in the following accounts:
‘They didn’t take into account anything I said at all’ (P2).
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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
‘You’d feel like you were going in to get shouted at, like you were in
school rather than … ‘How can I help you?’ it was, ‘What have you
done that for?’’ (P6).
In summary, although health professionals explained the importance of parents’
contributions to care, a common difficulty amongst parents was persuading
professionals to view them as valid partners in care. Much of the care that parents
described did not seem to be collaborative and often did not meet parents’
expectations, though health professionals did appear to be sensitive to the tensions
around collaborative practice.
Mechanisms for achieving collaborative care
The mechanisms that fostered collaboration were multi-faceted and similar for both
parents and professionals, but they had different perception of how these operated
in practice. Parent narratives indicated they were resilient when faced with
setbacks, in their attempts to secure the best for their child. At times parents
described tensions with health professionals if they challenged their professional
judgment. However, parents with knowledge and experience in caring for their child
with a long-term condition seemed better able to negotiate appropriate support.
One parent described how her expert knowledge and skills in managing her child’s
rare condition enabled her to collaborate with health professionals and participate
fully in a difficult treatment decision. Overall, parents perceived that they needed to
be resilient, tenacious, assertive and persistent when working with professionals, as
highlighted in the following accounts:
‘I kept ringing them, more than once a week sometimes-they were
very nice and very good on the phone…I just to keep saying is there
any cancellations, can we bring her in?’ (P1).
‘You could see [my child] just getting ill-er and ill-er and thinner and
thinner…I took him to the [GP] a few times and said look, he’s still not
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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
https://doi.org/10.1016/j.pedn.2018.08.011
right… can you do any other checks? ‘No, no, we’ve done everything
we can, he’s fine.’ …. Obviously, no he wasn’t’ (P6).
‘We had to make a decision to switch to Nasogastric feeding, so a
total exclusion of food, and that had to be …discussed and
agreed’ (P4).
It was evident across parent narratives that service-led rather than family-centric
processes operated, which hindered parents’ ability to engage with services and
collaborate with heath professionals. Most parents, including those with professional
insights into health and social care systems described learning to ‘work’ the system.
In addition, parents did not find health professionals particularly supportive if they
solely focused only on the child’s symptoms, rather than viewing the child in a more
holistic way and the needs of the family as a whole. Parents reported having to
make the most of opportunities offered to them, but at times the way services
engaged with them could be insensitive and upsetting. The following extracts
highlight parent perceptions of services:
‘You get two appointments a year with each specialist and you have to
make them work for you. I arrive with a list of questions [but] not
everyone has the skills or the determination to work that hard on
getting the best out of the professionals (P5)’.
‘…I think the school education system ends up having to pick up quite
a lot of the pieces, where health (systems) maybe should be doing
more’ (P2).
‘Saturday morning, I open this letter and there’s this long report about
how disturbed and disabled my son was……. its how you get treated
and the lack of, the lack of support and even when you get it, you just
have to just, its just like an endless battle’ (P2).
In contrast, health professionals described that they recognised the journey parents
faced when living with a child with a long-term condition and often with complex
health needs. Health professionals’ emphasised that a key component of their role
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AUTHOR COPY Journal of Pediatric Nursing – FCC special edition. Accepted Aug 18 2018; 30 pages
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was to build collaborative relationships with the family but appreciated that families
may find relationship building challenging. Health professionals described a desire to
understand parents’ support needs, including the level and depth of information
about the child’s condition, and what role parents wanted to adopt in relation to
care and decisions about care. However, both health professionals and parents
revealed care teams often made assumptions about expecting parents to be active
collaborators in care and care decisions, and the degree to which parents could
remain objective about their child’s care. The following extracts highlight differences
in perspectives in relation to building a collaborative relationship:
‘The starting point of our relationship with patients is collaborative
[but] I think the [nature of the] collaboration changes, you know, as
they go through their journey. Even before we look at collaboration,
we have to establish…the extent to which they wish to be involved…
but even that’s a collaborative endeavour, because you have to work
with them to find that out’ (H3).
‘… the medical team might think they’ve got a relationship…but the family
might not know how to engage’ (H3).
‘There was the multi-agency meeting. So they said “oh it would be
really helpful to show you what we’ve done, we’ve put [your child’s]
impairments, they blue-tacked it to the wall. I lost it, I just went take
that down, I can’t have that on the wall… they just took it off, oh
sorry, gosh, yeah, it was a bit inappropriate, wasn’t it’…. there was
nothing positive about it… I said how upset I’d been in the tone of the
(meeting), and she said well, you know, this is what we do, we’ve got
limited time (P2).
Although health professionals highlighted the importance of parents’ contributions
to care, a common challenge for parents was persuading professionals to view them
as valid partners. Where a child had multiple health conditions, parents struggled to
coordinate, attend and make best use of appointments with multiple specialist
services. Interestingly, the only community-based health professional who
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participated was particularly sensitive to the challenges families faced in relation to
engagement with multi-disciplinary and multi-agency teams. Other than this, there
was scant evidence of health professionals acting as parent advocates, except in a
general sense of care facilitation. However, one of the specialist nurse professionals,
whose practice revolved around individual appointments, perceived that a key
worker model ensured a clear point of contact for families over time:
‘…. if it wasn’t for a key worker, how would you try and work
collaboratively, I’d be pushed to say that that was, that was doable…
The keyworker is so important, because you’re working with these
families for sometimes eighteen years’ (H3).
Parents’ accounts highlighted that they valued and benefitted from the support and
advice from experts and were disappointed when they perceived the best level of
expertise was not available to them. In these instances, parents described that they
had to be assertive and used their knowledge and experience to ensure they
received the care they expected. For example, one parent noted that their child was
not being reviewed by the specialist leading the service and highlighted this level of
care was expected:
‘I actually mentioned two years down the line, I said how come my
Consultant is (name), yet I’ve never even seen him and it was only
then, funnily enough, the next one (appointment) I had was with
(consultants name)’ (P6).
Some participants from the family support group were emphatic that their
experience of care was positive; while others highlighting that the same service did
not value their contribution to care or health professionals did not seem willing to
work collaboratively. In many ways this illustrates that each family is unique in terms
of their expectations of services and the mechanisms they employed when working
with health professionals. Yet, across parent narratives, they described a desire to
build effective relationships with health professionals. Parents described that they
strove to work with, not against, health professionals but where expectations were
not matched by experiences, the relationships at times could become adversarial.
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Some parents emphasised their responsibility to building effective relationships with
health professionals. In contrast, others reported that health professionals were not
proactive in working in a way that fostering collaborations. The following extracts
highlight contrasting accounts of engaging with health professionals:
‘… we knew there were ‘guidelines’ and ‘model’ care but service ’fell short’ and
we wanted the ‘best’. It was the overall ‘ethos’ of care that was not right… we
moved to another centre to change services’ (P7, FGD).
‘You have to be adaptable and work with services’ … ‘work with not against
doctors and nurses’ (P8 & 9, FGD).
‘They’ve sort of softened up a bit … its more like what can we do to
help you now…a year ago, it definitely didn’t feel like that. I used to
dread the three month checks because I just knew I’d get a
rollicking’ (P4).
‘She used to ask about family, not just the child, so how are you, have
you got enough support, what’s going on, you know’ (P2).
In summary, the data suggests that health professionals’ focus was on relationship
building was a key mechanism for facilitating collaborative care. However, parents’
focus was on doing whatever was necessary to access the best services for their
child, which often involved developing resilience to obtain the services they
perceived would best meet their child needs. Ultimately, they wanted to become
knowledgeable about their child’s long-term condition and experienced in providing
care. There was evidence that when a family’s needs were acknowledged, parents
felt more positive about their relationship with health professionals.
Collaborative care: the need for an individualised approach
The final stage of the Framework approach involves making connections with and, if
appropriate, expanding existing knowledge (Spencer et al., 2014). Two core
concepts of ‘expectations about collaboration care’ and ‘mechanisms for achieving
collaborative care’ that emerged from the analysis are fluid constructs. The study
findings suggest that health professionals could consider strengthening their
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sensitivity and responsiveness to the changes in parent support needs. In the
context of working with families, the O’Grady and Jadad’s framework (2010) (Figure
1) would position the parent as moving from relative passivity to proactivity, with a
health professional moving from a directive to a more collaborative approach, as
both become attuned to each others’ roles in the collaborative process. In contrast,
understanding the fluid nature of the parent and health professional relationship
appears to be key to developing positive collaborative practice, as illustrated in
Figure 5. However, it is likely that parents and health professionals do not move
along the phases of the relationship in a linear fashion; contexts and family needs
fluctuate, and parent-professional relationships are rarely static.
Figure 5: Fluid relationship between parent and health professional
Discussion
The study findings have highlighted how parents and health professionals perceived
and experienced collaboration in the context of children with long-term conditions.
While there were some similarities between parents’ and health professionals’ views
Phase of the
relationship
HPs
position
Parent position
Behaviour
Purpose
Parent/ career
overwhelmed
Directive,
supportive
Wants
information but
may not be
processed
Uncertainty
Grieving
Parent provides narrative
of their child’s condition
Health professional
provides information,
advice and support
Immediate
management of long-
term condition
Establish processes
for long-term
engagement with
services
Learning how
to collaborate
Receptive,
present,
supportive
Learning how to
manage their
child’s long-term
condition
Parent asserting self as
expertise and confidence
building
Health professional
advising, supporting,
negotiating
Sharing in care
decision, moving
towards equality of
power
Collaborative
Available,
supportive
Managing their
child’s long-term
condition with
access to advice
and support
Parent supported to
choose how they want to
work with health
professionals
Collaborative practice
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on how to achieve collaboration such as building collaborative relationships (Figure
4), there were key differences in relation to their thoughts on how collaboration
operated in practice. A gap was identified between health professionals’
perceptions that they facilitate collaboration, and parents’ account that being true
collaborators in their child’s care was difficult to achieve. This mirrors the literature
on family-centered care where there is little consensus between parents and
professionals about what family-centered care is, and how it is practice (Coyne,
2015; Kish, Newcombe, & Haslam, 2018; Kou et al., 2012). Furthermore, the
inequality in the parent-professional relationship has been offered as a reason for
parents’ low expectations of family-centered care (Arabiat et al., 2018).
Discordance between the views of health professionals and parents about the
meaning and purpose of collaboration has previously been highlighted (Espezel, &
Canam, 2003; Swallow, et al., 2013). Arguably, collaborative practice is predicated
on an unquestioned assumption that the health professional holds the balance of
power in the relationship. In turn, the lack of shared understanding and commitment
to implementing parent-professional collaboration may be contributing to the on-
going professional domination of care and care decisions and therefore maintains
the power imbalance. This resonates with the barriers to implementing family-
centered care, where professionals find it challenging to shift away from tradition
ways of working with parents (Coyne, 2015; Smith, Swallow, & Coyne, 2015).
Health professionals’ accounts focused on engagement and partnership working, in
contrast parents’ accounts were dominated by struggling to access optimal care for
their child. Health professionals expected to use their expertise to facilitate the best
long-term condition management for the child and foster a collaborative relationship
with parents. However parents’ expectations had a different orientation; they
wanted to be taken seriously and to have appropriate access to information,
expertise and support. Therefore, whereas relationship-focused collaboration may
be a primary goal for health professionals, while important may well be a secondary
goal for parents. Effective communication (Arabiat et al., 2018) and building
relationships on mutual respect and trust (Swallow, & Jacoby, 2001) have been
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identified as ways of improving parent perceptions that their support needs are
being met. This is particularly relevant when considering the longevity of the
parent-professional relationships in the management of children with long-term
conditions.
The diverse needs and expectations of families can add to the challenges of
embedding the practice family-centered care into care delivery. Changes in
participants’ views of collaboration over time were not explored; however evidence
suggests parents’ support needs change, as they learn to manage their child’s
condition and work with health professionals (Coffey, 2006; Smith, Cheater, &
Bekker, 2015a). Overall, parents described a need for information early in the illness
trajectory, and emotional and practical support compared to those who were more
familiar with their situation and were in a stronger position to inform care decisions
(Figure 5). As parents’ confidence and competence in managing their child’s long-
term condition develops, they are more likely to shift towards a collaborative
paradigm to care and care decisions, rather than one that is professionally
dominated (Smith, et al. 2015). Therefore, developing a shared understanding of
the meaning and purpose of collaboration in the context of children with long-term
conditions is an essential stage in the development of collaborative practice.
Previous research has identified that parents develop considerable expertise in
managing their child’s long-term condition and expect to work collaboratively with
health professionals (Balling, & McCubbin, 2001), they expect care to be negotiated
(Dickinson, Smythe, & Spence, 2006), and they want to share care and care
decisions with health professionals (Bowes et al., 2009: Dickinson, Smythe, &
Spence, 2006; Smith et al., 2015). In order to facilitate parents’ care-giving roles it
has been suggested that health professionals move from a position of care
prescriber to collaborator (Smith, et al., 2015; Swallow et al., 2013). However, the
mechanisms of collaboration appear to differ between parents and health
professionals. It is likely that health professionals take a longer view, based on their
experience of the child’s expected trajectories. In contrast some parents in this
study seemed to concentrate on the present, perhaps not wishing to think further
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ahead. This may be a protective mechanism; parents’ concerns and uncertainties
about their child’s future have been identified as a core component of living with a
child with a long-term condition (Smith, Cheater, & Bekker, 2015b). Qualitative
research exploring these differing perspectives of care priorities could further
develop a shared understanding of collaborative practice.
Some of health professionals, in this study, highlighted the challenging journey that
parents embark upon. This resonates with theories of grief and loss (Stroebe, Schut,
& Boerner, 2017) and parents’ accounts of living in the past while acquiring the
skills to meet their child’s immediate needs (Gibson, 1999). The study findings
suggest that health professionals could develop skills in recognising and working
supportively with parents who will be faced with a range of emotions, putting aside
any preconceived beliefs about parent expectations, and assumptions that parents
expertise is a indication that they can be objective about their child’s care.
Two health professionals were also academics, and perceived their theoretical
knowledge influenced their views about collaborative practice. However, all of the
health professionals appeared to have well-developed ideas about the theory and
practice of collaboration, with their understanding about working with the parents’
and changing roles and responsibilities evolving over time. The difficulties associated
with implementing theory into practice have been widely debated; implementing
concepts such as collaboration into every day practice will continue to be
challenging if there is both an organisational and professional culture of paternalism
and priority is given to health professional care goals (Moore et al., 2017). This
professional dominated conceptualisation of collaboration potentially hinders the
flexibility in its application to practice across individuals and families, and health
settings. However, the historical documentation of the mothers’ movement in the
UK and successful campaigning to ensure nurses work with parents, rather than
exclude them (Connell & Bradley, 2000), illustrates the potential of parents to drive
collaboration.
Although collaborative practice can be embraced and valued as a key priority of the
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organisation and the multidisciplinary team, true collaboration will only occur if
health professionals take responsibility for creating patient and family partnerships
(Johnson, Ford, & Abraham, 2010). In relation to involving parents in care of a child
with a long term condition, key collaborative processes have been identified as
developing effective parent-professional relationships, negotiating with parents the
level of support required, and ensuring transparency of participatory processes
(Smith, Swallow, & Coyne, 2015). What appears to be lacking is an understanding of
what skills are required for both parents and health professionals, and the
development of practical tools to support collaborative practice. Santana et al.
(2018) offer a useful framework of structure, process, and outcomes that could be
relevant. The framework makes a connection between the individual/ family and the
systems of healthcare delivery. The processes required to embed collaborative care
into health practice including addressing organisational values and measuring and
monitoring patient/ family reported outcomes (Santana et al., 2018). Again, further
research to determine parent and indeed child outcomes in relation to measuring
collaborative practice would be useful.
Shifting from a passive to active parent - professional relationship is essential for
collaborative care to operate in practice (Fox, & Reeves, 2015). O’Grady and Jadad
(2010), describe a patient axis of passivity to proactivity and a health professional
axis from directive to supportive, as presented in the adapted version for parents
(Figure 1). The study reported in this article builds on this and suggests that the
development of effective collaboration between parents and professionals is a
process of continuous adjustments to changing needs and not simply a question of
progressing smoothly in one direction. The fluidity of the relationship between
parent and health professional, presented in Figure 5, emphasises that collaborative
practice must be flexible. Importantly, health professionals should accompany
parents on their journey and be sensitive and responsive to their changing support
needs.
The absence of advocacy processes in participants’ accounts was noticeable, with
the obvious exception of parents advocating for their child. Key messages from
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parents were that appropriate care is not accessed without a struggle, suggesting
health professionals should be willing to advocate and be proactive on behalf of
parents, particularly as many families may not raise concerns. Collaborative
practices could result in improved access and co-ordination of care by supporting
parents to interpret and navigate care systems especially for children with multiple
disabilities who are in the care of multiple teams.
Study strengths and limitations
Although the sample was obtained from a range of sources, it was primarily a
sample of convenience and may reflect participants who valued collaborative
practice. All health professionals in this study were interested in collaborative care
and did not necessarily represent the views of their professional groups. Equally,
parents who shared their views had no reason to be objective about their
experiences, although the parents who were also health professionals made specific
references to current pressures within UK health systems.
Although data analysis was undertaken initially independently and then together, we
did not use external peer checking. However, the Framework approach is a robust
method to analysis of qualitative data and enabled us to identify credible core
concepts and sub themes that were validated by the parent/carer support group.
The core concepts offer some clarity to help develop the theory and practice of
collaborative working in the context of care of children with long term conditions.
Conclusion
This article explored the question of how parents and health professionals view the
concept and practice of collaborating when caring for children with long-term
conditions. Collaboration is complex and multi-faceted, with parents and
professionals having different priorities but both focused on ensuring the best
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health outcomes for the child. To our knowledge, while recognising mothers have
driven many of the changes relating to being involved in their child’s care, the
concept of collaboration in healthcare appears primarily constructed by
professionals; models or frameworks of collaboration must be been driven by both
the family and health professional perspectives. Parents want and strive to develop
a collaborative relationship with health professions as a means of securing the best
services and care for their child, but face uncertainties about their role in the
relationship. Developing a shared understanding of the meaning and purpose of
collaboration when supporting children with long-term conditions and their families is
an essential stage in the development of collaborative practice.
Health professionals in the study emphasised that parents bring detailed expertise
about the child to the partnership but health professionals may find it challenging to
incorporate parents’ knowledge to inform clinical decisions. This may be a result of
tensions that exists for health professionals such as wanting to value individual
choice and contribution to care, while avoiding risk, and working within professional
and legal frameworks of accountability and maintaining their professional reputation.
Further exploration of the key tenets of collaborative practice such as listening, and
valuing the individual, could directly improve outcomes for families. This could
represent a shift from evaluating outcomes from a clinical assessment of the child
to evaluating signs of improvement in communication, sensitivity and power
differentials between health professionals and parents.
Acknowledgements:
This study was funded by the University of Huddersfield, UK.
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