Review Article :
Aim:
This
review presents a narrative overview of the existing literature relating to the
childs experience of being admitted to hospital from the perspectives of
children in hospital and childrens nurses who provide the majority of their
care. This
review was undertaken as part of an empirical study which led to the award,
doctorate in education. The paper is organized as follows: why the study was
undertaken, a definition of the process followed by an overview of the
literature accessed and a broad analysis of emerging themes. The timeframe covered;
the scope of the studies examined; identify theoretical frameworks; the
methodologies employed; the core themes identified with noted inconsistencies
and overall findings. A critique of the literature is then broadly presented;
it aims to identify gaps and inconsistencies. The material in each section
notes the studies which relate to each theme; highlights what they have in
common; notes the points of difference and any inconsistencies in respect of
findings. The review also tries to account for any differences in terms of the
information available from the studies. For example, methodological approaches,
differences in conceptualization and outline of synthesis by theme. Children
are significant and unique users of healthcare
services; this is reflected in the status of the childrens nurse and the
nature of the training/education they receive. The education
of childrens nursing may have consequences such that children may not
receive care that takes account of their specific needs. In the context of
developments that recognize children as rights holders (UNCRC 1989), including
their right to contribute to decision making that affects them, it is important
to explore how children experience hospital care, and also the perspectives of
those nurses who are charged with delivering that care. Doing so can help
inform debates about the nursing profession, and policy decisions that may
impact upon the care of children in hospital. The care delivered by the
childrens nurse may impact on the childs experience of hospital. This review
(and subsequent study) has been used to inform the new 2020 under graduate and
post graduate pre-registration childrens nursing programs at Queens University,
Belfast, Northern Ireland (NI). Definition,
timeframe, methodologies employed and scope of the studies examined: Whitely et al.
[1] defined narrative review as an effort to summarize different primary
studies into a comprehensive holistic overview of the topic. Strength then lies
in drawing together the diverse understandings of a scholarly research topic
[2]. Literature searches were conducted using a number of databases and results
assessed for eligibility using specific inclusion/exclusion criteria. Data was
initially extracted from each study using a data extraction sheet which
identified the author(s), date and source of publication, study design, key
findings, limitations and recommendations. The extracted data was then added to
a summary table and based on this key dominant themes were identified. These
provided the foundation for the formulation and the synthesis of a coherent
narrative. There were 51 papers included in the review. This
review is based on empirical and conceptual work about issues relating to
childrens experiences of hospital from the perspective of the children and
childrens nurses for the period 1839-2018. Relevant work was identified through
a process of selection using a broad time period, key search terms and a number
of appropriate data bases. Literature was sourced in November 2015 using Queens
University Belfast (QUB) online multi search database engine. This method was
appropriate to retrieve English language papers around the childs
experience of hospital from the perspective of the child and registered
childrens nurses, as it systematically searched the following databases:
Cumulative Index to Nursing and other Allied Health Literature (CINAHL Plus);
MEDLINE; PubMed; EMBASE; INTERNURSE; Web of Science; Psych INFO; and Science
Direct. The Database of Abstract and Reviews (DARE) were also searched in an
attempt to find systematic or integrated reviews on the topic. In an attempt to
source unpublished work, OCLAC dissertation, Index of Thesis, ISI conference
proceedings and Cambridge Scientific Abstracts were also searched. Key search
words/terms relating to the overarching research question were children; sick
child; child; pediatric; pediatric; hospital; experience; childrens nurse; nursing
care and child centered. Additional
key words identified in publications were considered as each database differed
in how it lists a publication. Boolean logic, such as AND and OR were used to
combine search terms. A search of reference lists of retrieved papers was also
undertaken. Grey literature such as policy and research reports was considered
in trying to overcome publication bias. This approach provided a broader view
of the literature under review; it did not solely rely on research studies.
Duplicate studies were removed at title citation stage of the process. Studies
were then either rejected or included at title, abstract or on full paper
review regards their relevance to the review question and ultimately the
authors doctoral study. In an attempt to uncover a more comprehensive body of
evidence this review considered all methodologies across a non-limited time
period to ensure all similar studies could be considered; the year 1839 was the
earliest start date available to the search engine. The focus of the review was
primarily on the childs experience of hospital between the ages six and 12
years old with an overnight stay in hospital. The childrens nurse perspective
of caring for the child in hospital was also sought, retrieved and reviewed.
Empirical studies, systematic and integrated reviews in addition to unpublished
theses, service evaluations were all deemed relevant to this review. The
underpinning frameworks adopted by similar studies were also of interest to
this study. A final search carried out in February 2018 uncovered two
additional and pertinent studies which are included in this review. Consulted
children around hospital design and their space, and secondly explored the view
of the registered nurse when caring for non-English speaking patients in a
childrens Emergency
Department (ED) [3,4]. The scope of literature examined includes empirical
studies, reviews, unpublished doctoral theses and service evaluation.
Collectively this review aims to provide an insight into the subject under
review plus identify any gaps or inconsistencies. Only two of the reviewed
studies acknowledged their underpinning framework(s) [5,6]. Both adopt
ecological model of human development, and with also adopting theory on
communication [6-8]. The focus of this review was primarily on studies that
relate to the childs experience of hospital. Where accessible, work which
examined the perspective of the childrens nurse was also retrieved with a view
to representing a more comprehensive insight into childrens experiences of
hospital. The review therefore presents the views of two groups. A larger
number of researchers sought the view of the child in hospital and those of
their parents. The view of the childrens nurse was not commonly sought. The
initial literature review suggests researchers either focused on a specific
population such as children with type
one diabetes, chronic illness, the good nurse or a broader exploration of
childrens experience of being in hospital [9-11]. A qualitative design e.g. ethnography,
phenomenology
and grounded theory was adopted by a majority of the studies, and generally
defended on the basis that it enabled participants to express their perceptions
more freely. A small number of studies adopted a quantitative or mixed methods
approach. Sample size consequently varied across studies in relation to their
preferred methodological approach. Data collection methods also varied, with
many using child participatory approaches; diversity was noted in interview and
questionnaire techniques. Methods included observation, interview, sentence completion,
diary, play, write and draw, and the use of wishes. Largely all reviewed
studies appeared to use appropriate methods to collect their data and address
the stated research question. This paper moves to identify the core themes of
the literature and noted inconsistencies. This review did not actively seek
studies representing the views of parents because the author favoured to seek
the views of children, as rights holder and service users. Analysis of
literature relating to the perspective of the (childrens) nurse is presented
next, followed by a review of literature representing the views of the
hospitalized child. Insights from the
childrens nurse caring for the child in hospital: This review found
five studies which provide insights into the nursing
perspective of caring for children in hospital [4,12-15]. Inconsistencies
include a lack of clarity around the terms, health professional and nurse.
Hence, it was not always clear if respondents were childrens nurses.
Furthermore, studies either provided limited or no demographic information on
participants. Limited insights were given regarding nursing levels; the skill
mix of those registered versus non-registered; child dependencies (level
of nursing care required due to a childs medical status/complex
health care needs) and the number of children each nurse cared for during a
typical shift. The listed variables have the potential to impact upon the
childs experience of hospital. A critique of the five studies is next presented
in chronological order. Starting with the earliest, unpublished thesis provides
invaluable insights into the social history of pediatric
nursing between 1920 and 1970 using oral histories. It offers a
retrospective understanding into the culture of the acute hospital and the relationship
of pediatric nurses with the children, (family and doctors). A direct quote
from sums up findings of the nurse participants during this period [12]. To
express a strong sense of value for their work history and are proud of what
they achieved. Nursing is seen as a demanding and challenging occupation, to
which the system of discipline and hierarchy presented most of the challenges.
Nursing was an emotionally rewarding area of work, the nurse participants
obtaining most satisfaction from being able to nurse the child better. Nurses
cared about the children but failed to realize that the emotional neutrality
associated with their professionalism was interpreted by the children as a lack
of affection. A
retrospective extract by a childrens nurse caring for a child undergoing
tonsillectomy aged five or six years during the 1960s, not only provides
evidence of the traumatized
child in hospital but also the emotional distress and frustration the nurse
endured due to the childs experience. If I get upset ignore me because it still
upsets me [crying] [pause] then they were taken into theatre and guillotined.
Blood everywhere, and then the next poor child was brought onto that table
[crying] [pause]. And the child that had had its Tonsils out with its big, red,
plastic piny, rubber apron thing, blood running everywhere, going past that
child [past the child about to have his or her operation] [crying] because the
child that had been operated on was taken into the recovery area [crying]
[pause] and I dont know why they could not have taken the returning child
another way………It was a total nightmare and it could have been done so much
nicer [12]. Jolleys study was a very significant time period in relation to the
historical evolution
of childrens nursing in the UK [12]. It captured an understanding of what
it was like to be a nurse caring for children in hospital and what the
experience was like for the child during the period 1920-1970. Although of
value, it does not provide a contemporary perspective of the childrens nurse
caring for children in hospital today. The findings of Coyne whose study sought
the view of 12 childrens nurses, 11 children and 10 parents about the childs
participation in hospital (two hospitals/four wards) complement Jolleys
findings. That said, no demographic details were provided. Even though the 12
childrens nurse participants were the slighter larger group, only two extracts
were used to support the nurse perspective. Coyne published this particular
study as two papers the second, solely reports the child respondents
perspective [14,16]. The two childrens nurse extracts are presented next. Coyne
reports one senior nurse as suggesting some nurses found it difficult to cope
with the child who was knowledgeable [14]. She explains: I know that nurses
will come out and say oh shes very cocky and she knows everything and sometimes
i think the nurses find it difficult that the children know about their
condition and know what medicines they are supposed to be taking. I think they
feel threatened by these children (Linda, childrens nurse). The
nurses in Coynes study valued the childs involvement in their own care and
respected the child as an individual and wanted them to speak out. That said
there was a noted lack of agreement on how to determine what that level should
be. For instance, according to Coyne, the childrens nurse may treat children
differently when they present with a mental
health related condition or lack capacity. Therefore, the child with physical
ill health may be more likely to be involved in the decision making about
their own care. For example, Coyne (2006b) [14]. It depends on how old they
are…it is difficult to put an age on it…..you would have to think are they
mentally alert, are they mentally sound, would they be able to do this
properly. Im sure they would especially those that only have something wrong
with their body and not mentally (Frances, childrens nurse). Koller et al
provides a rare insight from childrens
healthcare providers (n=8) when caring for children hospitalized in a
single room space due to a serious
infectious respiratory condition and as a result under extreme infection
control procedures. The respondents recounted the negative impact the
experience had on them as a professional and on the child. The single room
design allowed strict infectious disease measures to be imposed. Koller et al.
[13] findings relayed the emotional impact of Severe
Acute Respiratory Syndrome (SARS), communication challenges and role
changes. The healthcare providers did nurture and act as a short-term
substitute family, for example, were the family for that child, and you know if
it had to be my own, I would want someone to be there, so we tried to be in
there as much as you can. Its just whatever supportive measures you can give. Findings
did reflect upon the negative emotional effects of isolation due to loneliness.
One professional participant described a two-year old boys experience and how
the child changed, from initially screaming, crying wanting people there, to
almost getting to the point to where he sat in his crib staring out the window.
He didnt seem that interested if he was there or not [13]. Although the
participating professionals were not identified by discipline, one respondent
sums up the childs experience of hospital from the perspective of a health
professional. I almost cried to a point because it was sad and you would see
them as you walked past the door. You know, walk by the hallway and you could
hear them. We have monitors down our hallways because of the isolation and
everything is closed and you could hear, hear them crying. That was…. the worst
[13]. Respondents
also noted their Personal
Protective Equipment (PPE) could create a sense of unease. As one stated,
We went in looking like aliens [13]. This study clearly reported the lines of
communication needed to be kept open using a phone communication system. It was
invaluable to the health professional, child and parent as it provided a
risk-free mode of communication. It also gave the child access to the outside
world i.e. speak with family and friends. Jackson-Brown and Guvenir [15] also
provided valuable insights through their analysis of responses from 13 nurse
respondents on caring for children with Learning
Disabilities (LD) within the acute hospital setting. The nurses reported
experiencing anxiety when admitting a child with LD and to have issues regards
the childs level of dependency and the required levels of nursing to meet the
childs needs. The nurses did report feeling more prepared for a planned
admission, as they were able to read the notes in advance; an extract sums up
the experience, we were thrown in the deep end regarding his needs and it can
be very difficult to keep an eye on him all the time. He needs constant
supervision, which just isnt always possible. However,
within the same study one of the two children reported hospital as scary, I
dont like it. Challenges on managing the childs behaviour within an acute
setting were also reported by the nurse, for example, issues were voiced around
the child with intravenous fluids in progress, The thing I found particularly
difficult was when he was attached to the intravenous infusion and …he was
zooming off, trying to do other things with the drip stand behind him (nurse)
[15]. In relation to the ward environment, the individual room was preferred by
the nurse caring the child with learning disabilities, as the main ward was
deemed too noisy for the child. Restrictive access to the child in the
individual room did not appear to be imposed within this study. In this
instance, the child did not appear too confined to their room. It appeared
caring for the child with LD presented the nurse with challenges around
communication and preferred bed space within the ward. Both appeared to cause
the childrens nurse anxiety. The findings from Jackson-Brown and Guvenir [15]
would suggest the childrens nurse to not have the knowledge and skills they
required to fully meet the needs of this group of children within an acute
hospital setting. The final study in this group, by Cody et al whose USA study explored the views of 17 registered
nurses caring for non-English speaking children within an ED setting (where
children do not stay overnight), reported even with adequate resources
(interpreter), barriers and challenges did exist. That said, the experience of
caring for children who could not speak English was reported to develop the
nurses ability to more effectively care for this group in the future. Once
again, study findings suggest nurse education to not fully prepare nurses in
meeting the needs of all children in hospital, and in this instance those who
were non-English speaking. The nurses in Cody et al study may not be childrens
nurses, as the USA adopts a generic nursing programme - childrens nursing is
seen as a post-qualifying specialty. An insight by two of Cody et al. [4] nurse
participants are cognizant of the challenges relating to time and
communication. It takes a lot more coordination and practice. It requires extra
time as well as good non-verbal skills (participant 1). It usually takes longer
since I have to speak slower (participant 16) [4]. In
summary, the views of nurses caring for the child in hospital suggest
challenges exist within time restraints (to provide care), communication skills
and an environment which may isolate and separate the child from their family
and other children. Those studies considered to provide a childrens nursing
perspective of the childs experience of hospital similar to this study,
reported challenges to exist when providing health care to the child and for
that care to sometimes negatively impact upon the nurses health and well-being.
Communication challenges existed when children were considered knowledgeable,
had a mental health issue or learning disability and for those children who did
not speak English. The health professional/nursing participant did appear
ill-equipped with the necessary knowledge and skills to adequately care for all
types of children in hospital. The dependency levels of children in hospital
and the required levels of nursing needed to meet the childs needs were also
highlighted as an area of concern. The use of a bed space was considered
positive and negative, with the nurse preferring the child with LD to have a
single room as it made the provision of care easier and suited the child more
by providing privacy and a reduction in noise level. For others, the single
room appeared like a prison cell when used to isolate the child from the
outside world. The lived experience of the isolated and distressed child did
negatively impact upon the professionals emotional health and well-being too.
With the voice of the childrens nurse considered, the review moves next to
those studies which provide insights from the childs perspective of being hospitalized. Insights from the
child staying in hospital: Previous studies such as Carney et al. [18] reported
traditionally parents and professionals were asked what they understood about
the childs hospital experience. Both UK and International literature suggest a
change occurred at the turn of the century, with healthcare providers trying to
prevent or reduce the length of hospital stay for children whilst at the same
time, improving the environment, communication between the child and health
professional, along with parental access. An integrated review by Coyne [17]
which reported on the concerns
and fears around illness and hospitalization for children, found children
to want to participate and that there are many benefits associated with
participation. However, childrens participation in decision making may have
been over sold by other studies as children actually prefer less involvement.
Disquiet was also reported around childrens
experiences of pain, immobility, disfigurement, separation from significant
others, loss of control and disruption to their lives as being all potentially
stressful whilst in hospital [19-23]. It was established even short periods of
hospitalization can have negative effects on the child, their siblings and
family [24-27]. Although a general consensus of existing studies reports the
childs experience of hospital as stressful, the childs position appears fluid
in reporting both negative and positive views of their experience in hospital
(inclusive of the childrens nurse). Not dissimilar to the insights of nurses
caring for the child in hospital, four broad themes from the childs perspective
of hospital emerged from this review. A data extraction sheet was used to
identify the dominant themes which were then distilled to key findings and used
to construct the narrative. These relate to the following: ·
Communication; ·
Environment
(hospital ward); ·
Isolation
(individual/side/single room); ·
Child
relationships with family and nursing. Communication
relates to written, verbal and non-verbal, inclusive of the childs right to be
silent. A critique of studies and reviews found communication to be pivotal to
the childs experience of hospital. For example, a study of 388 children aged
seven to 11 years by Pelander and Leino-Kilpi [28] which
used sentence completion to gain insights into the childs best and worse
experiences of hospital reported worst experiences were around people,
feelings, activities and environment. Only 32 of the children reported there to
be nothing bad about their experience in hospital (nurses were also deemed
positive). Communication was also reported as key to their experience. In line
with this finding, Noreña Peña and Juan [29] also reported communication
important when determining how nurses communicate news information to
hospitalized children. Using a critical incident technique, data was collected
from 30 children aged between eight and 14 years, using participant observation
and semi-structured interviews. The analysis yielded three main categories: the
childrens reaction to the information; nursing staff behaviour as a key aspect
in the exchange of information and communication of news as well as childrens
experience. This study emphasized the need to promote childrens consent and
participation in nursing interventions. At the same time period, Fletcher et
al. [30] reported the nurse of the future needing to be skilled in non-verbal
communication. Not surprisingly, a number of studies have attributed inadequate
communication between the child in hospital and the childrens nurse to exist
[6,14,31-35,16-18,]. For
example, Carney et al. [18] who used a questionnaire to seek the views of 213
children aged four to 17 years, before, during and after hospitalization,
reported the children cope better with hospital when informed about their care.
The communication and information provided by the childrens nurse during their
initial admission to hospital may then have impacted upon the childs experience
of hospital. Two child extracts demonstrate the positive and negative impact of
communication on the childs experience of hospital. All the nurses and doctors
explained everything what was happening with my arm and it was a lovely visit
and I enjoyed it very much. I was thinking what the nurse and doctor would do
to me. I was really scared. The reports of 11 children in hospital by Coyne
(2006b) [14] found children to want to be consulted and given information so
they could understand their illness, be involved in their care and prepare
themselves for procedures. Isabel aged 14 years talked about the consequences
of non-inclusion within the childrens ward, she states, I thought hey Im the
patient here, talk to me, explain what you are going to do. Further work by
Coyne and Kirwin in 2012 [33] reports a lack or
effective communication between the childrens nurse and child may cause the
child to cope and react in different ways. The children were reported as having
anxiety, stress, fear and loss of control when receiving care in hospital. The
negative experiences were mainly concerned with the need for more information
and lack of involvement. The childrens perception of their hospital experience,
environment and their perspective on the childrens nurse may therefore
oscillate as a result of inadequate communication. The
children suggested that the health professional (inclusive of the childrens
nurse) should speak using child friendly language, shorter sentences with some
feeling unprepared for procedures and upset when not listened to. They also
found it challenging to communicate, as the childrens nurse was always busy!
Their views on decision making varied, as some children wanted their parent or
health professional to make decisions on their behalf. Child extracts from
Coyne and Kirwan [33] which seemingly support effective communication as
pivotal to the childs experience of hospital are as below, if doctors and
nurses work in a childrens hospital they should be able to talk to children in
a language that children understand (child, 7 years).It is about me, I should
be part of the conversation… (Child, 12 years). Coyne and Kirwans [33] study
was insightful of the change in how children are viewed in research, as the
focus on child and young persons wishes and feelings about hospital life were
reflective of an understanding by the researchers that they had a right to be
heard in respect of decision making. As in other studies, the childrens
statements and wishes centered on hospital facilities, the views of doctors and
nurses, communication, interaction and participating in decision making. Coyne
and Kirwan argued that the childrens nurse should recognize the benefits and
issues that remain around the communication needs of children being met.
Interestingly the nursing student, who is not included in staffing numbers (NMC
2010), was reported as having more time for the child in hospital than the Registered
Childrens Nurse (RNC). A
nurse child relationship, at theme from a doctoral study by Joan Livesley and
Long which reported that even though the researcher did not recruit childrens
nurses to their study, their methodological approach included 100 hours of
observation which captured the voice of the child and childrens nurse. Livesley
and Longs study which was undertaken in two phases reported the child and childrens
nurse as living in differing worlds when in hospital. An extract from an
episode of nursing care on a childrens ward with Kelvin aged 12 years and
childrens nurse Mary, reinforced the importance of the childs voice being
heard. In it Mary complained that Kelvin had been particularly difficult,
describing him as stroppy and almost shouting at him, as he requested his pad
be changed [34]. Mary was appalled when she discovered Kelvins experience of
hospital (unknown to Mary) comprised of over 50 surgical procedures. Kelvin was
also reported as being knowledgeable and aware that his stitches could become
infected if they became contaminated with blood or faeces. He explains, because
the blood can infect it, then I would have to get another operation… (Kelvin,
12 years). Having his request ignored left Kelvin feeling sad, and aware he was
not being treated properly. Mary then explained, i knew that the patient was
coming and… I was just a bit stressed about that… I know that he does need to
know what were doing… (Mary, nurse). The
relationship between Mary and Kelvin suggests Mary, the childrens nurse knew
Kelvin as a patient, but not as a person. Marys reflections were noted as
representing the need for nurses to have sufficient time (to fully care),
therein making the life of hospitalized children a little more tolerable.
Childrens nurses were represented as having considerable influence in
determining the childs experience of hospital. Shilling et al provided a unique
synthesis of qualitative studies which reported the voice
of disabled children when admitted to hospital. Their review reported on
the importance of communication between the child, parent and staff in
decision-making on matters that affect the disabled child. Notably, Shilling et
al found little differences in the responses of able bodied and disabled
children, with both reporting negative experiences of staying in hospital.
Their findings were based on methods of data extraction and synthesis where
each study was independently reviewed by two of the authors, themed and then
integrated into a thematic framework and finally re-reviewed against the
framework. This review also appraised the papers reviewed by Shilling et al
[35]. For example Franklin and Sloper [36]. As
noted previously, Livesley and Long [34] who used an ethnographic approach,
observed children in an English hospital as struggling for their competence to
be recognized and their voice heard. This was demonstrated both through what
they said and in their non-verbal behaviour, such as turning away and being
silent. The child was therefore not seen as an equal partner in their care, and
for that reason had to rely on an adult. In the absence of an adult, the child
was reported to receive basic health care from the childrens nurse. Ciara aged
12 years, desperate to get her dads attention resorted to throwing things, she
explains. My dad was there, and he was asleep. I couldnt move and I needed a
drink. I tried to reach out for his leg, but his leg was pulled in... I was
throwing teddies at him. As stated, communication appears key to the childs
experience of hospital. Their rationale for doing so was because of its
impartiality and non-aligned status to a specific population, setting and/or
criteria. This study reported healthcare professionals/nurses as categorizing
the child in hospital when wanting their healthcare needs met, as either a
passive bystander or active participant. The child as a passive bystander who
is quiet and shy, in the absence of a parent, may receive less nursing
intervention/basic care. Their voice was also reported as challenging by the
childrens nurse. That
said if a child assumes the passive bystander position in the presence of their
parent, this often results in the health professional and parent conversing
about the child in their presence, with the child listening in the background.
The childs position also had significant implications for the level and nature
of communication a health care worker had with them. The active participant on
the other hand would vigorously seek their health needs being met. The
healthcare workers response was to interact directly with them (either in the
presence or absence of their parent), listen to them and give them an
opportunity to ask questions. In reality though, children may move from one
position to the other. Corsano
et al. [37] similarly explored the hospitalized childrens representations of
their relationship with nurses and doctors during the same time period. Carney
et al. [18] whose study elicits the experiences from children as young as four
years old found preparation for hospital essential in reducing anxiety and
alleviating of negative perceptions (16.2% of participants in their study
mention anxiety as a theme). Children again appeared to cope better with
hospital when informed. The communication and information provided by the
childrens nurse during their initial admission to hospital may therefore impact
upon the childs experience of hospital. The children who were prepared for
hospital were mainly positive, with the younger child reporting they preferred
their parent to be with them during their stay in the hospital environment
similar to communication, the ward environment was reported as pertinent to the
childs hospital experience [5,6,17,18,30,33-35,38,39,].
Studies are categorized in respect of the differing views. The term,
environment within the context of this review and study, relates to the ward setting
in a hospital where children receive inpatient healthcare. The terms single
room, individual room and side room were used interchangeably in the
literature-the differing terms were not confusing. A broad view by Fletcher et
al. [30] which used write and draw, reported the issues relating to children
admitted to the hospital environment as being scared or worried, and fear of
the unknown. Concerns after admission to hospital related to the care
environment, social needs, and individual/personal needs and requirements. The
childs space was reported by Silav Utkans [3] to be of great importance to the
child in hospital, as it can make them feel either safe or unsafe. Schalkers et al.
[40] poignantly titled their study to echo the need for personal space-[I would
like] a place to be alone, other than the toilet. Unfortunately,
the childs healthcare services in the UK cannot always ensure a child can
remain in the same bed space during their stay in hospital. A child may be
allocated a bed space in an individual room, bay of four to six bed/cot spaces
or within a long ward with 10 (approximately) bed spaces, known as a
Nightingale ward. Allocation and reallocation of a childs bed space is usually
undertaken by the ward manager/nurse in charge using their professional
judgement based on the individual health needs of each child in the ward. The
childs personal space within the ward environment includes a bed or cot to sit
and sleep in plus a locker in which to keep their personal belongings (RCN
2014). The
child may also have a bed table and chair. Their bed space may be a single or
double room (side room) with ensuite toileting facilities, or a dedicated bed
space within the ward where children share toileting facilities. Lambert et al.
[41] on investigating the perspectives of 55 children aged five to eight years
around their social space in hospital (inclusive of inpatients) found young
children want a diverse range of age, gender and developmentally appropriate
leisure and entertainment facilities which were integrated within the
environment. The children wanted to be socially connected when in hospital.
Todays technology can help children connect with home, school and wider world.
Coyne and Kirwan [33] and Marcinowicz et al. [42] also reported a lack of play
facilities. A review by Coad and Shaw [43] reported children and young people
want more say in the planning and development of appropriate hospital and
community health services. A more recent non-UK descriptive study by Silav
Utkan [3] which consulted children (number of participants unreported) around
hospital design and their space using crayons and paper to draw how they would
like their bedroom to be in hospital, reported their findings using three
pictures. The childrens drawings similarly reported a need to be able to
communicate with the outside world. In addition to the usual items found within
a childs bedroom such as bed, table and chair, participants also drew a
computer and television. Children also reflected their own personalities and desires
in the pictures they drew. Other included items were picture frames, books, CDs
and toys. The concept of a personal area was important
for the older child (young person). Their space more often included shelves,
drawers and cupboards for their own items; they also wanted to arrange the
items themselves. The childs view of their hospital bedroom was that it should
also be a place to talk with their visiting friends. An area of interest was
noted in that medical devices and related materials were not included in the
pictures. The ward environment also central in Livesley and Long [34] reported
children (n=9) to find the childrens nurse as having the power to provide or
withhold toys. Lambert et al. [44] study also reported on the value of an array
of activities as it helped create an environment that would relieve boredom,
offer choice, control and a less sense of isolation for the child. The use of
technology was also thought to be positive for the child socially, as it could
connect them while in hospital and externally to home, school and beyond. Batterick
and Glasper [38] used a retrospective quantitative approach to seek the childs
view of hospital; the childrens ward was reported to not meet their needs. Just
over half (52%) of child participants (n=213) mentioned the physical
environment as well as: food, television, video and games. Findings related to
the childrens physical surroundings (again highlighting the environment as a
central theme within the childs experience of hospital). Negative
physical aspects were reported by the children around the food, their inability
to watch television/videos, play games, beds, theatre gowns, equipment, noise,
temperature and smell. Their need for having their own space was highlighted by
references to the childs own locker, bed and a need for privacy. The social
aspect of the environment related to positive interactions with other children.
The children were equally aware of their space. For example, some kids were
friendly; the playroom is a good idea the adolescent area was good. It helped
me have privacy [18]. Edwards also signified the environment to be an important
factor in the childs experience of hospital. Aspects pertinent to the
environment are summarized by Edwards as follows
[5]: ·
Feelings
associated with the hospital setting; ·
Being
a different and unfamiliar environment; ·
Experiencing
loneliness, isolation and disconnection; ·
Restoring
equilibrium; ·
Fear
of the unknown and undergoing treatment. Edwards collected their data through unstructured
participatory observation and semi-structured interviews alongside a variety of
methods and activity-based approaches [5]. This study found the childs
experience of hospital to be disruptive and to produce feelings of powerlessness
and uncertainty. This was experienced due to a complex variety of factors,
situations and people impacting upon their experiences. The children and young
people were diverse in terms of age, experience of being in hospital and
illness, with some being acutely ill and others having long term chronic
illness. Like Lambert et al. [6] both qualitative studies suggested children to
find the hospital very different to the childs home environment. The amenities
available to the children in hospital were explored by Marcinowicz et al. [42]
from the perspective of 22 hospitalized children aged 10-16 years (and their
parents), who were all interviewed in the hospitals school room. From the
childrens perspective, the possibility to spend their free time in an interesting
way was important; examples of the childs views were, theres a day room here.
We have different games and we play…And theres a library, also great. You can
use the computer and borrow games (Boy, age 11). I especially liked the day
when the hospital teachers performed a [theatrical] play and were reciting
rhymes. It was very funny. It was good fun and nice. Something was going on, it
wasnt so boring (Girl, age 14). From the older childrens perspective, privacy
was mentioned in the context of safety. Security
is most important. To feel secure in the hospital…I dont mean that I feel
insecure but for example Im not afraid to say that I need a bedpan. I mean its
important to ask for help and know they will actually help you (Girl, age 14).
Marcinowicz et al. [42] reported humour and fun to be important to hospitalized
children. Likewise, Coyne and Kirwan [33]
reported inadequate play facilities as one of the reasons for childrens
dissatisfaction with the hospital and health-care
professionals. A discussion paper by Ford et al. [45] which declared being
in hospital is not normal, reported on the role of play for the child in
hospital as, Play is important. It is important to childrens social, physical
and emotional development and to their sense of well-being and sense of
themselves. The paper now presents the next broad theme of isolation from the
childs perspective of hospital. Isolation
within the context of the child in hospital relates to the childs separation
from their family (parent/guardian), visitors (those dear to them) and the
other children admitted to the ward. Both Edwards and Carney et al. [5,18]
reported on the negative impact of separation from family and friends.
Similarly, Coyne (2006a) [16] also raised concerns around the separation from
family and friends, as an issue for children, reports the magnitude of
separation as clearly illustrated by one young person aged 13, who when asked
what she missed from her home life states, Miss my mum, my dog, my sister, the
atmosphere, my own bed, the living room, the telly and the garden. I miss
school....miss my friends at school.... Like, Im worried about my schoolwork if
I stay too long in hospital. What will happen next? With
isolation/separation presented in a broader sense, Austin et al. [46] published
a review of the childs experience of being cared for in a single room (side
ward). The 16 papers showed a paucity of child specific studies, therefore a
firm conclusion about how children experience isolation could not be drawn.
That said, the review did report children appeared more concerned with the
separation from their family than the possibility of acquiring an infection. In
relation to practice the review proposed childrens nurses have a pivotal role
in caring for children in isolation by; keeping families well informed;
ensuring isolation policies are adhered to; spotting behavioural and emotional
cues and ensuring adequate input from play specialists and education. They also
recommended the use of technology to relieve boredom. For example, isolation in
a side room is non-negotiable if the child has an infectious disease or high
risk to infection as result of their illness or treatment. Additional criteria
include constant observation i.e. positioned in a bay or main ward near the
nurses station for optimal viewing. As stated previously, although not
considered as true isolation, a positive finding was reported by Jackson Brown
and Guvenir [15] where one child reported I dont like it outside (on the ward).
I like my room. Their study reported many of the parents, nurses and children
found the experience in hospital was made easier for the child with a learning
disability if their given space was an individual room. Relationships
between the hospitalized child and the childrens nurse are considered first,
followed by an overview of findings relating to the relationship between the
child and their family. Jolleys summing up the childs experience during the
period 1920-1970 as a negative experience [12]. Jolley states, It is found that
the child participants tended to be traumatized by their hospital experiences.
The cause of this trauma is found to be the way in which nurses practiced
according to a scientific and professional paradigm. Unwittingly, this last
resulted in the nurses being perceived by the child participants as lacking in
affection or emotional care for them as children. Many of the participants
remain confused and troubled by this aspect of their experience. Jolley stated
most of the participants reported the nurses as being busy and associated this
with the routine nature of the work. An extract by a child in hospital in 1934
aged four to five years provides an insight into their relationship with a
nurse [12]. I cant remember anybody sitting by my bedside, everything seemed to
be [pause] so straight, so erect, so blue and white [pause]. I probably didnt
know the word at the time but starch, you know everything, nothing was
unruffled, everything was so upright and clean and straight and so proper I
suppose. But the one bit of kindness was [Name] but I really think I was just
another patient [to her]. Robinsons review of 31 studies between 2000 and 2009
on the CYPs view of health professionals in England succinctly found the CYP to
not only want the health professional to be familiar, accessible and available,
but be informed, competent and to provide them with information [47]. They also
wanted the professional to be a good communicator, to participate in their
care, uphold both their privacy and confidentiality and to demonstrate
acceptance and empathy. These qualities were similarly reported in two studies
in 2009 by Moules and by Brady [48,31]. Schmidt
et al. [49] reported child participant narratives to include she used kind
words, they were nice to me, they were happy and helpful. This qualitative
study undertaken in the USA reflects the views of 65 children who all reported
positive feelings about nurses. Most indicated that although they were
sometimes fearful of their nurses they helped alleviate their fears. This study
reinforces the power of positive communication in meeting the needs of the
child in hospital. Does it relate to the fact that the researchers were nurses,
their methodological approach, cultural differences or a healthcare
system/non-NHS which valued nurses who were given time to care? The 2009 study
by Brady in Ireland, sought the views of 22 children aged seven to 12 years on
their understandings of the good nurse. This study reports communication to be
a vital component of a positive hospital experience for the child. Brady
reported the good nurse should use terms of endearment, as it was important to
the child and made them feel special. The children also appreciated being
praised for being brave during unpleasant procedures [31]. This was in contrast
to a qualitative study by Woolhead et al. [50] (n=74) where being overfamiliar
with older patients was seen as disrespectful. John age 12 explains, She calls
me sweetie pie. Randall
and Hill [51] in a later study reported the findings of children and young
people as describing a good nurse as having, A professional persona and the
ability to connect with them, delivering timely and effective care and being
respectful of the childrens dignity. Rush and Cooks [52] study findings concur, reporting good communication, respectful
attitudes, and nurses attributes and behaviour (i.e. looking smart) as
important to children in hospital. The attributes were significant in respect of
the childs experience because they preferred the nurse to act as a professional
rather than a friend or surrogate family member. The children wanted the nurse
to be nice to them and respect their view. The study by Marcinowicz et al. [42]
referred to previously, also explore the childs perceptions of the nurse. Here
the nurse was not defined as a childrens nurse. It reported qualities,
behaviour, and tone of the nurses voice as well as their verbal and nonverbal
communication patterns as being key to the childs experience of hospital.
Qualities for the best nurses were given as simple statements-being nice,
pleasant, friendly, familiar, entertaining while they cared for them and gentle
when are carrying out procedures. The tone of voice and non-verbal behaviour
used by the nurse was also reported as important to the child. Extracts
include, the ideal behavior of a nurse is when she is talking with a nice, calm
voice (Boy, age 12). They look at you so grimly, so angrily, as if you were
disturbing them or something like that (Girl, age 14). Bradys
study appeared to have equally clear views between the good and bad nurse;
similar to other studies the child was represented as wanting the nurse to like
them and for their family to be involved in the care provision [31]. The
children also reported needing their parents close by them when they were in
hospital. Carney et al. [18] concur in reporting continuity with care-givers
as most important for younger children; the children in Carneys study also
wanted their parent to be present. Bjork et al. [53] also reported children as
wanting to be involved in decision-making on their care and as needing to have
a good relationship with healthcare staff. Batterick and Glasper [38] in their
study of 50 children used a questionnaire to capture the views of both children
and their careers over a period in hospital, found participants reporting that
the childrens voice was not always accurately heard. The reason for this was
attributed to the fact that parents, acting on behalf of their children, often
completed questionnaires intended to access the views of the child. The young
people in their study was represented as rightly wanting their voice heard but
as having had their voice compromised by the acts of their parent(s). The 2004
audit similar to Carney et al. [18] found dependence on adult careers to occur
even when children wanted to be consulted. An alternative view was reported by
12-year-old Ciara in Livesley and Longs study [34]. In this instance, Ciara
preferred to seek her dads attention to get a drink; she chose to not use her
right of voice. Ciaras account supports Lambert et al. [6] findings which
reported the nurse to view the developing child in hospital to move along a
continuum where they may act in an opposing manner. For example, Ciara may
alter from being a passive participant to an active participant within the
communication process of healthcare. Interestingly, a study by Aldiss et
al.[54] reports upon a hospitalized child (Amy) being asked who she would tell
if she needs something and her parents were not present, she responds by
saying, she would tell the nurse. When asked if she would tell a doctor, Amy
replies, No, never, however Amys rationale for no, to asking the doctor is, If
I talk to so many people theyll think Im silly. In this scenario the childrens
nurse was represented as non-judgemental. This childs report reinforces the
view that the child and adult differ in their perception of the world, here the
child appears less developed psychologically and emotionally and lacks
confidence in competently dealing with the situation. However, adults with
learning disabilities and mental health issues also struggle with social
situations. Jackson
Brown and Guvenir found of the 13 families giving their views only two children
with learning disability participated. Views related to carer anxiety,
preparedness for admission difficulties managing the childs behaviour, ward
environment and individual/side room. The two children stated they were scared
and nervous about being in the open ward and a single room was preferred over
the open ward environment. The main issue for staff in Jackson Brown and
Guvenirs [15] study was the childs behavior. Interestingly, supporting and
managing the child while on the ward mostly fell to the carer/parent and not
the nurse. The children, their careers and nursing staff all reported anxiety
around the childs admission, with nursing staff feeling more prepared than
parents for a planned admission as they could read the notes. Nurses in Jackson
Brown and Guvenirs [15] study sum up their experiences. We were thrown in the
deep end regarding his needs [nurse]. It can be very difficult to keep an eye
on him all the time. He needs constant supervision, which just isnt always
possible (nurse). Parallel to the nursing views was the view of one of the two
children who described the hospital as scary. I dont like it. The findings from
the 11 children aged 11 to 14 years in Randall and Hills [48] study in 2012
were not aimed to generate new understanding but to improve an undergraduate
childrens nursing curriculum. The participants were found to view the nurse as
a female who dresses differently to the doctor and as someone who was there to
look after them 24/7 but not to diagnose. The latter was seen as the doctors
job. One child stated to want the nurse to tuck you into bed and give you a
kiss, suggesting that the nurse was seen as acting in place of a parent.
Finally, the children in this study wanted the Health Professional (HP) to have
a good relationship with them and to demonstrate empathy and acceptance as a
person [51]. Whilst children appeared to mostly want their parent to be with
them in hospital and want recognition as a rights holder, they sometimes wanted
their parent to act on their behalf when in hospital. The parent was also
reported to act as the childs advocate when not asked for by the child. With
the childs view of the childrens nurse overall a positive one, their experience
of staying in hospital could be improved in relation to communication and
environment. Conclusion In
summary, this narrative review presents the findings of previous empirical
studies relating to the childs experience of hospital from the perspectives of
hospitalized children and childrens nurses who are charged with their care. It
notes that whilst most of the work accessed employs qualitative methods, it is
for the most part descriptive with very few studies drawing on a conceptual
framework to guide their study. Narrative methodology enabled the process of
selection using a broad time period, key search terms and a number of
appropriate data bases. Data was then successfully extracted from each study
using a data extraction sheet which identified the author(s), date and source
of publication, study design, key findings, limitations and recommendations.
The extracted data when added to a summary table enabled the author to identify
key dominant themes, which provided the foundation for the formulation and the
synthesis of a coherent narrative.This
approach was commended by the external examiners at the authors doctoral viva
voce; the two UK Professors in Childrens Nursing supported this approach over a
systematic review as it provided a broader insight into what research had been
undertaken, methodologies, findings plus identification of the gaps in the
literature. It also informed the empirical study around its theoretical
framework, method of data collection and development of the research questions
for the childrens nurse participants. Child participant research questions and
data collection tool were co-developed with a Child
Research Advisory Group (CRAG) of primary school children. The main
findings of the narrative review are organized thematically and the main themes
emerging in respect of the hospital experience of children are represented as
relating to communication, environment/ ward design, play, isolation/separation
and the childs relationship with family and childrens nursing to be
particularly important to the child in hospital. The
small number of studies presenting the perspective of the childrens nurse
suggests a deficit exists in their knowledge and skills to effectively care for
all children staying overnight in hospital. Educational deficits for childrens
nurses caring for children in hospital were around child development, those who
were knowledgeable about their illness and for those children with mental
health and learning disabilities. Challenges also exist around time restraints
(to provide care), the health and well-being of the nurse and an environment
that meets the needs of the child and childrens nurse. As
stated, the narrative approach adopted by this review was found to be
appropriate for this research study. It did however identify a limited number
of studies which included the view of the childrens nurse alongside little or
no demographic information, or as to why childrens nurses select childrens
nursing. None of the studies which focused on childrens nurses highlighted the
lack of other professionals to work with the nurses: psychologists, volunteers,
etc. A gap seemed to also exist around life-threatening situations where the
narrative aspects of children might have also been of interest. Further
research is therefore recommended within the noted areas. Nurse education also
needs to consider the noted deficits when writing new programs. This
review wishes to acknowledge the children and nurses who agreed to participate
in the reviewed studies. Secondly, it acknowledges the authors Doctoral
supervisors, Professor Joanne Hughes and Dr Katrina Lloyd for their help and
support in guiding this review to ultimately draw together the diverse
understandings of this scholarly research topic. 1. Whiteley
D, Elliott L, Cunningham-Burley S and Whittaker A. Health-related quality of
life for individuals with hepatitis c: a narrative review (2015) Inter J Drug
Pol 26: 936-949. https://doi.org/10.1016/j.drugpo.2015.04.019 2. Jones
K. Mission drift in qualitative research, or moving toward a systematic review
of qualitative studies, moving back to a more systematic narrative review
(2004) Quali Rep 9: 95-112. 3. SilavUktan
M. Children hospital design in children picture (2012) Proc-Soci Behav Sci 51:
110-114. https://doi.org/10.1016/j.sbspro.2012.08.127 4. Cody
I, Nakamura-Florez E and Young-Me L. Registered nurses experiences with caring
for non-English speaking patients (2016) Appli Nurs Rese 30: 257-260. https://doi.org/10.1016/j.apnr.2015.11.009 5. Children, Sick child,
Child,
Pediatric, Hospital, Experience, Childrens nurse,
Nursing care, Child centered.Childrens Experiences of Staying in Hospital from the Perspectives of Children and Childrens Nurses: A Narrative Review
Sonya Clarke
Abstract
Methods: A narrative review of the
literature was undertaken-relevant work was identified through a process of
selection using a broad time period, key search terms and a number of
appropriate data bases. Data was initially extracted from each study using a
data extraction sheet which identified the author(s), date and source of
publication, study design, key findings, limitations and recommendations. The
extracted data was then added to a summary table and based on this key dominant
themes were identified. These provided the foundation for the formulation and
the synthesis of a coherent narrative. There were 51 papers included in the
review.
Findings: The review therefore
presents the views of two groups-(1) children who stayed overnight and (2) childrens
nurses. The main findings of the narrative review are organized
thematically. The views of nurses caring for the child in hospital suggest
challenges exist within time restraints (to provide care), communication skills
and an environment which may isolate and separate the child from their family
and other children. The main themes emerging in respect of the hospital
experience of children are represented as relating to communication,
environment/ ward design, play, isolation/separation and the childs relationship
with family and childrens nursing to be particularly important to the child in
hospital.
Conclusion: Both hospital
ward/environment and childrens nurse differ greatly to the childs home and
family. Full-Text
Why the Study
Was Undertaken
Narrative Literature
Review
Communication
Physical and
Social Environment
Isolation of the
Child in Hospital
Relationships
with Nursing and Family (When in Hospital)
Recommendations
Acknowledgments
References
Keywords
