Family-Centred Care For Hospitalized Children Aged 0-12 Years: A Systematic Review of Qualitative Studies Reviewers

JBI Library of Systematic Reviews JBL000693 2012;10(57) 3917-3935
Page 3917
Family-centred care for hospitalized children aged 0-12 Years: A
systematic review of qualitative studies
Reviewers

Huaqiong Zhou MCN; BSc; RN
1
*
Linda Shields MD, PhD, FACN
2
Robin Watts AM PhD MHSc BA DipNEd RN FACN
3
Marjory Taylor B App Sci; BA
4

Ailsa Munns RN RM CHN (Cert) BSc (Nursing) Master (Nursing) FACN
5
Irene Ngune MPH BScN
6

* corresponding author [email protected]

1. School of Nursing and Midwifery, Curtin University; WACEIHP: A Collaborating Centre of the
Joanna Briggs Institute

2. Tropical Health Research Unit, School of Nursing and Nutrition, James Cook University,
Townsville; and School of Medicine, The University of Queensland; and WACEIHP; A Collaborating
Centre of the Joanna Briggs Institute

3. WACEIHP, Curtin University Bentley WA Australia and Princess Margaret Hospital for Children
Subiaco WA Australia, a Collaborating Centre of the Joanna Briggs Institute, School of Nursing and
Midwifery, Curtin University, GPO Box U1987, Perth, Western Australia

4. Library and Information Service, Child and Adolescent Health Service Princess Margaret Hospital,
Western Australia.

5. School of Nursing & Midwifery, Curtin University

6. Research Fellow, Department of National Drug research Institute, Curtin Health Innovation
Research Institute, Curtin University.
Review question/objective
The objective of the review is to synthesise the existing evidence on family and/or health providers
experience of family-centred models of care for hospitalised children aged 0-12 years (excluding
premature neonates).

(*Some sections of this protocol are adopted or adapted from the Cochrane Systematic Review of
family-centred care in hospitalised children 0-12 years (2007)
1
and its update (2012)
2
and are published
here with permission from Wiley. A more detailed discussion of the development of the concept of
family-centred care is available in these publications.)

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Background

Family-centred care is defined as a way of caring for children and their families within health services
which ensures that care is planned around the whole family, not just the individual child/person, and in
which all the family members are recognized as care recipients.
3, p.1318
A number of related terms
have been used to describe the attributes of family-centred care;
4
these include partnership-in-care,
5

parental involvement,
6
nurse-parent partnership,
3
parental participation,
7
and care-by-parent.
8,9

Until at least the late 1950s, hospitals worldwide tended to be bleak places for children. It was believed
that visits from parents would inhibit effective care
10
and were detrimental to the child, who would
become distressed when the parents left.
11,12
Researchers began to suggest, however, that children
whose parents did not visit them suffered acute emotional trauma which may have long-term
psychological consequences in adolescence and adulthood.
13,14
In 1956, the British government
commissioned a report into the welfare of children in hospital. The resulting report, the Platt Report
15
,
recommended that visiting be unrestricted, that mothers stay in hospital with their child, and that training
of medical and nursing staff should promote understanding of the emotional needs of children. The
process of change has resulted in a humanisation of paediatrics,
16,17
although the movement away from
traditional approaches to health service delivery to the involvement of families in all aspects of the
planning, delivery, and evaluation of health care has been slow.
18,19
The foundation for a family-centred
approach to paediatric health care is the belief that a child's emotional and developmental needs, and
overall family wellbeing, are best achieved when the service system supports diligently the ability of the
family to meet the needs of their child, by involving families in the plan of care.
20-22

Potential Advantages and Disadvantages of Family-Centred Care
There are a range of potential benefits and difficulties associated with the provision of family-centred
care. One of these is the degree to which the family is seen as responsible for the childs care. In a
number of cases family-centred care has been interpreted as care that is led by parents, who are
regarded as expert in the care of their child, with the health professional acting as a consultant.
6,7

However, in recent years research has indicated that parents feel that they are being made totally
responsible for the care of their child and the expectations of them, at least initially, are too great. In
Coyne and Cowleys
8
words: the pendulum has swung too far in the other direction.
p.893
They are
much more comfortable working a truly collaborative way with health-care providers.
9

The hospitalisation of a child, whether planned or unplanned, is stressful for even the most
well-organised and functional family.
23
The significant adjustments to both parent and healthcare
provider roles when a child is hospitalised may result in understandable levels of stress.
24
A number of
studies report that the stress levels of parents are reduced by being more informed and involved in
caring for their children while in hospital.
25
However, on the other hand involvement can lead, at least
in the short term, to additional stress or anxiety for both the parents and child. Parents may feel that they
Page 3919
are expected to provide input into the care of their child beyond their expectations or capabilities, or are
given more information than either the child or the family is ready to hear.

Professional communication and the provision of information are key elements in the success or
otherwise of family centred care. In their study of parents information needs in relation to their
chronically ill children, Hummelinck and Pollock
26
highlighted the double-edged nature of information in
these situations; there is a delicate balance between the positive effects and the potentially negative
impact i.e. it can increase anxiety. Information was also a theme identified in Ygges
27
study of nurses
perceptions of parental involvement in hospital care. Not only did the nurses indicate that it was
important to discuss with the parents what information was important to them at each stage, but that the
information provided to them must be the same from all health personnel.

Family centred care also requires specifically designed or adapted facilities. Verwey, et al
28
found that
attending to parents physical needs was an important component in reducing stress. Ensuring aspects
such as comfortable sleeping arrangements, nutritious food and time to relax away from the ward made
a familys experience a more positive one.

Researchers have also reported challenges when trying to implement changes which would result in
meaningful family involvement in the care of their hospitalised child. Healthcare providers have reported
a lack of adequate education in relation to understanding and implementing the concept of
family-centred care in a practice situation, as well a lack of shared understanding of, and commitment
to, family-centred care among all health professionals and families.
18, 29-32

Darbyshire
7
suggested that family-centred care was a wonderful idea, but difficult to implement
effectively. A number of authors agree, questioning family-centred care as a model of care.
31,33
and the
ethics of continuing a model which is becoming increasingly described as ineffective are under
scrutiny.
34

Standard Models of Health Care for Children
Family-centred care is regarded as different to the standard models of care used in paediatric health
services. In the latter, often the healthcare provider plays a major role in assessing and formulating a
plan of care, based upon the perceived needs of the child and/or family. In the medical or standard
model of health care, the healthcare worker plans care around the child's illness and treatment needs,
and the family is generally expected to comply with treatment recommendations.
35

Implementation of Family-Centred Care
It is expected that the development, implementation and outcomes of family-centred models of care
may differ according to the population and setting in which the models are applied. For example, the
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needs and outcomes for families with a chronic condition who experience long hospital stays may differ
from those of families of a previously healthy young child who is admitted for a treatment procedure.
Also, older children may have a greater awareness and understanding of the reasons for their
hospitalisation. Therefore, models of care may reflect increased participation of the child in their hospital
care. However, even if the processes of family-centred care are seen as making a difference and
advantageous in their own right, reliable reassurance that they result in more good than harm should be
sought. Currently there is limited systematic information on how these principles have underpinned
changes in healthcare practice and service delivery when a child is hospitalised, and the effect of
family-centred approaches on child and family outcomes and health service delivery.
20

Several systematic reviews have been conducted on the effectiveness of family centred care but very
few studies have met the inclusion criteria. Consequently no conclusions could be drawn from these
reviews. Shields, et al.
1
conducted a Cochrane review of the effectiveness of family-centred care
including randomised control trials, before and after and cohort studies from 1960 to 2004. An update of
the Cochrane review was also undertaken by Shields, et al.
2
in 2012 which examined randomised
control trials only from 2004 to December 2011. Furthermore, Shields, et al.
36
conducted a systematic
review of quasi-experimental studies on the topic published between 2004 and December 2011.

A literature review by Shields
37
on the topic examined qualitative studies published between 1990 and
2004. Eleven research articles were included in the review. Three main themes emerged: role
negotiation, parental expectation of participation in their childs care, and issues relating to power and
control. The findings revealed that family-centred models of care were influenced by negotiation
between staff and families, and roles of both parents and staff within interactions that took place in
hospital during a childs admission. Corlett and Twycross
38
also reviewed evidence on the negation of
parental roles within family-centred care. The results revealed that family participation in their childs
care hindered by nurses lack of communication and limited negotiation. Nurses did not routinely
negotiate with parents even though nurses had clear ideas on what nursing care parents could be
involved in. In addition, Coyne
39
conducted a review of both research and literature from 1993 to 2007
on childrens participation at the health service level. It was found that children were rarely involved in
decision-making process and their views were rarely sought nor acknowledged.

To date, there is no formal systematic review on the qualitative evidence of family-centred models of
care.

This systematic review aims to examine any qualitative studies from 2004 to December 2012 that
address the experiences and /or perceptions related to family-centred care by families and/or health
care providers.
Keywords Family-centred, hospitalised children, qualitative, family
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Inclusion criteria
This review will consider studies that include hospitalised children aged 0-12 years (but excluding
premature neonates), their family and/or health providers.

Definitions:
Child/children: throughout this review, the term 'child' or 'children' is used to include all newborn
infants, babies and children up to the age of 12 years being cared for in hospital; and all parts of
hospitals that provide a service to children. The definitions of childhood can vary, and age limits
are arbitrary. For the purpose of this review the National Library of Medicine's medical subject
headings were used to define the age cut off of 12 years. However, we have excluded neonates
born prematurely and who are patients in a neonatal intensive or special care nursery, as their
requirements for family-centred care, and the ethics and philosophies of care around this
particular group, are different to those in a ward/unit where full term infants and children are
nursed.
40
We have excluded studies about adolescents for similar reasons.

Families: throughout the review the following definition of the family will be applied: The family
is a basic social unit having as its nucleus two or more persons, irrespective of age, in which
each of the following conditions are present:

the members are related by blood, or marriage, or adoption, or by a contract which is
either explicit or implied;
the members communicate with each other in terms of defined social roles such as
mother, father, wife, husband, daughter, son, brother, sister, grandfather,
grandmother, uncle, aunt; and
they adopt or create and maintain common customs and traditions. This definition has
been modified from Nixon's original definition
41
to allow for inclusion of significant
others who do not usually cohabit with the family.
Healthcare providers involved in caring for hospitalised children.
For the purposes of the review, a healthcare provider will be used to describe any health
professional involved in the care of hospitalised children.

Phenomenon of interest
The review will consider studies that investigate family and/or health providers experience of
family-centred models of care for hospitalised children. Only studies that provide clear evidence that the
family and/or child were actively involved in the planning and/or delivery of health care during the child's
hospitalisation will be considered for inclusion. For the purposes of the review, the minimum criteria for
active involvement included evidence of collaboration between health carers and the family and/or child
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in the planning and/or delivery of care as soon as possible after admission or during the preadmission
period.

The elements of family centred care can be grouped into three clusters as follows:
5

Family as a constant
Culturally responsive
Supporting family individuality.

Family as a constant can be evidenced by:
Recognising family strengths
Parent/professional collaboration
Needs-based family support
Flexible provision of health care
Sharing information with families.

Examples of how the family centred care model can be culturally responsive include, but are not
confined to, the family receiving culturally competent health care and respect being shown for family
diversity.

Supporting family individuality and need for different types of family support can be demonstrated by:
Respecting family coping methods
Providing emotional support
Family-to-family support
Attending to developmental needs of the child and family.

Further details are contained in Appendix I.

Exclusions:
Facilitating parent-to-parent support studies where there is no clear evidence of collaboration between
the family and/or child and health care provider in the planning and/or delivery of care will be excluded.
Such studies would include parental presence during health care procedures such as routine
examinations, anaesthetic induction, venepuncture and post-anaesthetic recovery or bereavement
team/protocols. Parental presence on these occasions without any framework of ongoing collaboration,
communication, etc. does not meet the holistic principles on which family-centred care is based.

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Types of Outcomes
This review will consider studies that include but are not confined to the following outcome measures:
Experience of family-centred care models of care from family and/or health providers:
- clarity of role expectations
- nature of relationships between family and health care providers
- parental comfort with the extent of their degree of involvement in childs care
- content, consistency, timeliness, understandableness and degree to which information
provided meets parents needs
- family members stress and anxiety levels
- adequacy of facilities for familys needs
- health care providers support for the collaborative model of care
- adequacy of health care providers knowledge and skills, and available time to implement
family centred care.

Perceptions of family-centred care models of care by family and/or health providers:
- how the experience is viewed
- degree to which expectations are being or have been met
- degree to which the model of care has been individualised to meet specific needs of
families
- degree to which the model of care is implementable in actual operating contexts
- degree to which health care providers are committed to the models implementation.

Types of studies
The review will consider qualitative studies. This includes, but is not limited to, designs such as
phenomenology and grounded theory.

Search strategy
The search strategy aims to find both published and unpublished studies. There will be no limitation by
publication language and databases will be searched from inception to date. A three-step search
strategy will be utilised in each component of this review. An initial limited search of MEDLINE and
CINAHL will be undertaken followed by analysis of the text words contained in the title and abstract, and
of the index terms used to describe article. A second search using all identified keywords and index
terms will then be undertaken across all included databases. Thirdly, the reference list of all identified
reports and articles will be searched for additional studies.
The databases to be searched include:
Medline
CINAHL
Embase
PsycINFO
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CSA Sociological Abstracts

The search for unpublished studies will include:
Web of Science Conference Proceedings
Australian Research Online
UK Clinical Research Network: Portfolio Database
Bandolier
Google
MedNar

Initial keywords to be used will be:
child/children, parent/s, health services, family centered care/family centred care

Assessment of family-centredness
To begin with, we will screen all potential studies for family-centredness. In order to assess relevant
studies for the degree of family-centredness, this review will utilise a modified rating scale based on that
developed by Trivette
5
(Appendix I). These authors used the 9 elements of family-centred care, as
described by the Association for the Care of Children's Health, to develop 13 evaluation items that
describe the features of family-centred care. These sub-elements are further grouped into three cluster
groups (Cluster 1: family as a constant; Cluster 2: culturally responsive; Cluster 3: supporting family
individuality) derived from an original cluster analysis by Trivette.
5
The clusters were designed to be
used to help describe the model of family-centred care for individual research studies.

A rating of 0 to 4 will be applied to each of the 13 sub-elements of family-centred care, as follows:
0. Article includes no evidence that the intervention either implicitly or explicitly was based upon the
elements of family-centred care.
1. Article includes a minimal amount of implicit evidence that the intervention was based on the
2. Article includes numerous instances of implicit evidence that the intervention was based upon the
3. Article includes a minimal amount of explicit evidence that the intervention was based upon the
4. Article includes numerous instances of explicit evidence that the intervention was based upon the

The maximum possible score is 52. Two reviewers will independently score the study against Family
Centredness Score Form (Appendix I). The scores from the two reviewers will be averaged as the final
score for the study.
Page 3925

One of three degrees of family-centredness will be assigned to each study assessed:
A study with a score of 42 or more from a possible total of 52 (80%) will be considered as
having a "high degree of family-centredness",
Those studies scoring between 50% and 80% will be classified as having a "moderate degree
of family-centredness",
Those studies scoring below 50% will be classified as having a low degree of
family-centredness.

Those studies with a family-centeredness score of less than 50% will be excluded from the study.

Assessment of methodological quality
Those studies that are classified as having either a high or moderate degree of family centredness will
then be assessed by two independent reviewers for methodological validity prior to inclusion in the
review using standardised critical appraisal instruments from the Joanna Briggs Institute Qualitative
Assessment and Review Instrument (JBI-QARI) (Appendix II).
42

Any disagreements that arise on either instrument - family centeredness or quality of studies - between
the reviewers will be resolved through discussion, or with a third reviewer.

Data collection
Qualitative data will be extracted from papers included in the review using the standardised data
extraction tool from JBI-QARI(Appendix III).
42
The data extracted will include specific details about the
populations, study methods and findings of significance to the review question and specific objectives.

Data synthesis
Meta-synthesis of the qualitative findings will be undertaken. This involves aggregation or synthesis of
the findings to generate a set of statements that represent that aggregation through assembling the
findings (Level 1 findings), and categorising the findings based on similarity in meaning (Level 2
findings). These categories are then subjected to a meta-synthesis to produce a single comprehensive
set of synthesised findings (Level 3 findings) that can be used as a basis for evidence-based practice.

Conflicts of interest
There are no reported conflicts of interest.

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Acknowledgements
There are no sources of external funding to report. The authors would like to thank the Cochrane
Communication and Consumers Review Group, and John Wiley & Sons Ltd, for permission to publish
sections of the Cochrane Systematic Review on Family-centred Care for Hospitalized Children aged
0-12 years.
1

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Appendix I Family Centredness Score Form
Study ID (Author Surname Year): __________________________________
Name of review author completing this form: _______________________
Date form completed: ____/____/_______
Q1
Does this study focus on family-centred care? YES NO
Q2
Does the model of family-centred care in this study score > 25 based on criteria below?
YES NO
RATING
13 Elements of FCC 0 1 2 3 4
Cluster 1: Family as a constant
Family as a constant in childs life
Recognising family strengths
Parent/professional collaboration
Needs-based family support
Flexible provision of health care
Sharing information with families

Cluster 2: Culturally responsive
Culturally competent health care
Respecting family diversity
Providing financial support
Page 3931
Instructions for Applying the Form
Q1:
Include any health care intervention that aims to promote the family-centred model of care during a
child's hospitalisation. Only studies which provide clear evidence that the family and/or child were
actively involved in the planning and/or delivery of healthcare during the child's hospitalisation will be
considered for inclusion in this review.
For the purposes of the review, the minimum criteria for active involvement will include evidence of
collaboration between health carers and the family and/or child in the planning and/or delivery of care as
soon as possible after admission, or during the preadmission period.
Aspects of Family centred care model could include:
Environmental interventions as evidenced by collaboration with the family and/or child in the design
or redevelopment of facilities to provide an environment that maximises parental involvement and
enhances child recovery and/or convalescence, care-by-parent units, privacy areas;

Family-centred policies which may include open visiting hours for siblings or extended family, parent
participation in their child's care to the extent they choose (for example, feeding, bathing);
Communication interventions could include parental presence and participation at daily
interdisciplinary ward rounds and family conferences to plan future care, developing collaborative
care pathways where both parent and/or child and health carer document issues and progress,
reorganisation of health care to provide continuity of care-giver (such as, primary nursing), shared
medical records, local hospital based interpreters;
Educational interventions could include structured educational sessions for parents of
technologically dependent children, continuing education programs to equip staff to provide care
within a family-centred framework, preadmission programs;
Family support interventions such as flexible charging schemes for poor families, referrals to other
hospital or community services (such as, social workers, chaplains, patient representatives, mental
health professionals, home health care, rehabilitation services), facilitating parent-to-parent support.

EXCLUDE Studies where there is no clear evidence of collaboration between the family and/or child
and health care provider in the planning and/or delivery of care. Such studies could include parental
presence during health care procedures such as routine examinations, anaesthetic induction,
venipuncture and post-anaesthetic recovery, bereavement team/protocols, because singular
interventions such as parental presence without any collaboration, communication etc does not meet
the holism of FCC.
Studies which examine parental presence for a singular procedure, for the same reason. As an
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example, parental presence for anaesthesia induction might occur in the OR, but theres nothing to say
that the same hospital will let parents be involved in any other aspect of the childs care. Similarly, a
study that examines parental presence for venepuncture is not studying FCC, rather it is only parental
presence for a specific reason.
Q2: Scoring Criteria for Family Centredness
0 Article includes no evidence that the author(s) either implicitly or explicitly addressed, endorsed,
or advocated adoption of adherence to the elements of FCC.
1 Article includes a minimal amount of implicit evidence that the author(s) advanced adoption or
support of the elements of FCC.
2 Article includes numerous instances of implicit evidence that the author(s) advanced adoption
or support of the elements of FCC.
3 Article includes a minimal amount of explicit evidence that the author(s) advanced adoption or
support of the elements of FCC.
4 Article includes numerous instances of explicit evidence that the author(s) advanced
adoption or support of the elements of FCC.
Explicit evidence = an element was clearly stated and distinctly expressed
Implicit evidence = If it could be inferred that the author(s) descriptions, arguments etc. were
consistent with the intent of the elements of FCC

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Appendix I: JBI QARI Critical appraisal instrument

I

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Page 3934
Appendix II: Data extraction instruments

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JBI Library of Systematic Reviews JBL000693 2012;10(57) 3917-3935

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