Family centred care: a review of qualitative studies

CHILDREN AND FAMILIES doi: 10.1111/j.1365-2702.2006.01433.x

Family centred care: a review of qualitative studies

Linda Shields PhD, FRCNA

Professor of Nursing, University of Hull, Hull, UK; Adjunct Professor, University of Queensland, Australia and University of

Northumbria, Newcastle-upon-Tyne, UK; Visiting Fellow, Orebro University, Sweden; and Queensland University of

Technology, Brisbane, Australia

Jan Pratt RN

Nursing Director, Primary Care Program, Community Child Health Service, Royal Children’s Hospital and Health Service

District, Brisbane, Australia

Judith Hunter MBE, MA, RN

Clinical Director, City Hospitals Sunderland, Sunderland, UK

Submitted for publication: 23 June 2005

Accepted for publication: 27 September 2005

Correspondence:

Linda Shields

Professor

Faculty of Health and Social Care

University of Hull

Cottingham Rd

Hull HU6 7RX

UK

Telephone: þ44 1482 463326

E-mail: [email protected]

SHIELDS L, PRATT J & HUNTER J (2006)SHIELDS L, PRATT J & HUNTER J (2006) Journal of Clinical Nursing 15, 1317–

1323

Family centred care: a review of qualitative studies

Aim. To review systematically qualitative studies, which were found during a lit-

erature search for a Cochrane systematic review of the use of family centred care in

children’s hospitals.

Background. Family centred care has become a cornerstone of paediatric practice,

however, its effectiveness is not known. No single definition exists, rather a list of

elements that constitute family centred care. However, it is recognized to involve the

parents in care planning for a child in health services. A new definition is presented

here.

Methods. The papers were found in wide range of databases, by hand searching and

by contacting the authors where necessary, using terms given in detail in the pro-

tocol in the Cochrane Library, in 2004. Qualitative studies could not be used for

statistical analysis, but are still important to the review and so are described sepa-

rately in this paper.

Results. Negotiation between staff and families, perceptions held by both parents

and staff roles influenced the delivery of family centred care. A sub-theme of cost of

family centred care to families and staffs was discovered and this included both

financial and emotional costs.

Conclusion. Further research is needed to generate evidence about family centred

care in situations arising from modern models of care in which family centred care is

thought to be an inherent part, but which leave families with the care of sick

children with little or no support.

Relevance to clinical practice. Family centred care is said to be used widely in

practice. More research is needed to ensure that is it being implemented correctly.

Key words: children, family centred care, parents, nurses, nursing

� 2006 The Authors. Journal compilation � 2006 Blackwell Publishing Ltd 1317

Introduction

The term ‘family centred care’ (FCC) is widely used in

paediatrics, although its attainability as a model of care is

questionable (Darbyshire 1994, Coyne 2003). Work in the

United States suggests that it comprises several elements

(Box 1) (Shelton et al. 1987, Johnson 1990), and from those

the The Institute for Family Centred Care provides a definition:

Family centred care is an approach to the planning, delivery, and

evaluation of healthcare that is governed by mutually beneficial

partnerships between healthcare providers, patients and families.

Family centred care applies to patients of all ages, and it may be

practiced in any healthcare setting [Institute for Family Centered

Care 2005 (Website)].

We suggest another definition which encapsulates what FCC

means for families and children and for health professionals

who work with it: family centred care is 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. To test the

effectiveness of FCC, we are undertaking a Cochrane

systematic review at present (Shields et al. 2004). The

inclusion and exclusion criteria for the review can be found

in the published protocol; but basically, studies are included

if they meet the following:

• Any healthcare intervention that aims to promote the

family centred model of care during a child’s hospitaliza-

tion.

• Only studies that provide clear evidence that the family

and/or child were actively involved in the planning and/or

delivery of healthcare during the child’s hospitalization

will be considered for inclusion.

• For the purposes of the review, the minimum criteria for

active involvement will include evidence of collaboration

between healthcarers 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.

• Included studies must also compare family centred models

with professionally centred models or standard models of

care (Shields et al. 2004, p. 7).

The search terms consisted of 58 iterations and so are not

included here, however, they can be found in the Cochrane

review protocol (Shields et al. 2004). The search was

undertaken in 2004; since then we have examined the

literature regularly to see if other admissible studies have

been published. The databases searched are included in

Box 2.

Results

Quantitative studies only were included for meta-analysis,

but the search revealed 11 qualitative research studies, which

met the above criteria. These provide valuable insight into the

perceptions, use, expectations and effectiveness of FCC and

will be described in the Cochrane review. The aim of this

paper is to review these papers critically and provide a

summary of their findings. They were found using the

extensive search strategies (Shields et al. 2004) and were

distilled from the large number of studies found because they

fitted with the objectives of the protocol (p. 6). Because they

were qualitative studies they could not be used for the meta-

analysis, however, their content is equally important. They

date from 1991 to 2003 and come from several countries. We

systematically reviewed the papers by examining their aims,

subjects, methods, results and conclusions. Their diversity

meant that a strict regimen could not be employed as a review

tool, so we looked for similarities and differences, in

particular in their results and interpretations. Two main

themes emerged – negotiation between staff and families and

Box 1 Elements of FCC as proposed by the Institute of Family

Centred Care (Shelton et al. 1987, Johnson 1990).

• Recognizing the family as a constant in the child’s life

• Facilitating parent-professional collaboration at all levels

of healthcare

• Honouring the racial, ethnic, cultural, and socio-economic

diversity of families

• Recognizing family strengths and individuality and respecting

different methods of coping

• Sharing complete and unbiased information with families on a

continuous basis

• Encouraging and facilitating family to family support and

networking

• Responding to child and family developmental needs as part

of health care practices

• Adopting policies and practices that provide families with

emotional and financial support

• Designing health care that is flexible, culturally competent,

and responsive to family needs

Box 2 List of databases searched.

• Medline 1966–2004

• The Cochrane Central Register of Controlled Trials

(Central) (The Cochrane Library, Issue 2, 2004)

• Cinahl 1982–2004

• PsycINFO 1972–2004

• ERIC 1982–2004

• Sociological abstracts 1963–2004

• Social work abstracts 1977–2004

• Australian medical index (AMI) 1966–2004

L Shields et al.

1318 � 2006 The Authors. Journal compilation � 2006 Blackwell Publishing Ltd

the importance of roles for all, though a sub-theme of cost of

FCC to families and staff was discovered also. These themes

are interwoven, but for ease of review the studies are

presented here under those headings. Table 1 shows the

authors, country, the type of study and the numbers and

characteristics of subjects in these studies.

Negotiation

Negotiation between parents and/or children and hospital

staff was often the key to the success of interactions during a

child’s hospitalization. In Darbyshire’s 1994 study, he

presented insight into the way of ‘being-in-the-world’ for

parents and nurses during a child’s hospitalization. The

parents described the boredom suggested by Meadow (1969)

and described parenting a child in hospital as ‘parenting in

public’ (p. 17). Some parents felt that they were being

imposed upon to stay with their children and that the nurses

expected them to contribute to their child’s care. They moved

into a mode described as ‘defensive parenting’, felt they were

in danger of being a nuisance to the nursing staff and,

consequently, would modify their parenting style while the

child was in hospital to meet what they thought was expected

of them by the nurses. When nurses assessed parents for

participation in their child’s care, they drew their conclusions

from parents’ response to their interpretation and explan-

ation of situations. This created a climate where parents who

were not demonstrative in their care and love for their child

may have been misinterpreted as not being able to fully

participate in the care.

Coping strategies used by parents of children in hospital

were examined in a study of parents’ views and experiences

of parent participation in a 22-bed paediatric unit in England

(Neill 1996a,b). Parents’ understanding of participation in

care, their motivation for involvement in care, aspects of care

in which parents wanted to become involved and inhibitors

and facilitators to parental involvement were probed. Giving

responsibility of the child to the health professionals, infor-

mation seeking, avoiding involvement in procedures, which

hurt or distressed the child, being available for the child,

leaving the child when appropriate and using support systems

such as family and friends and other parents in the ward,

were important. Guidelines for the involvement of parents

in an acute hospital were developed. Parents understood

Table 1 Summary of qualitative studies

Study

number Author and country Study type Number and characteristics of subjects

1 Darbyshire (1994)

Scotland

Phenomenology 30 parents of hospitalized children, general paediatric wards,

27 nurses who cared for them

2 Neill (1996a,b)

UK

Content analysis 16 parents of children aged from two to five years, general

paediatric wards

3 Kristensson-Hallstrom and

Elander (1997)

Sweden

Grounded theory 12 mothers and eight fathers of boys admitted for hypospadius

repair, paediatric surgical ward

4 Espezel and Canam (2003)

Canada

Thematic analysis Eight parents of children aged over 18 months of age who attended an

outpatient clinic but who had multiple experiences of hospital

admission due to complications of prematurity

5 Evans (1994)

UK

Grounded theory Five mothers who were taught to give intravenous antibiotics to

their children on an oncology unit

6 Callery and Luker (1996)

UK

Thematic content

analysis

24 parents whose children had been discharged from hospital three

weeks before from a paediatric surgical ward

7 Kawik (1996)

UK

Quantitative and

qualitative

content analysis

12 parents were compared with data collected by questionnaire

from 55 nurses, general paediatric ward

8 de Lima et al. (2001)

Brazil

Participant observation 10 mother-child dyads, general paediatric ward

9 Shields and King (2001a,b)

Australia, UK,

Indonesia, Thailand

Content analysis 76 parents, 94 nurses, 22 doctors and 53 allied health staff in two

developed and two developing countries, general paediatric wards

10 Callery and Smith (1991)

UK

Critical incident

technique

64 nurses, general paediatric wards

11 Callery (1997)

UK

Participant observation

and interview,

thematic content analysis

10 nurses, one healthcare assistant and one surgeon, 24 parents of

children who had recently been hospitalized in general

paediatric ward

Children and families Family centred care review


participation to involve being available for the child, being

able to carry out basic care and being informed. They

understood the importance of their presence for the child, of

knowing what was going on and being able to continue their

role as parents. Helping the perceived busy nurses was

important for some. Although parents wanted to be involved

in basic care, none were involved in its planning. Parents were

less keen about being involved in what was called ‘clinical

care’ (taking temperatures). They were afraid of making

errors, even though they felt quite confident when doing these

at home. All the parents wanted to be involved in discussions

about the child’s care. No numbers of parents who gave these

answers was supplied, so it was not possible to rate the

factors in importance. In the absence of details of the sample

of respondents it is not possible to generalize these results

further.

These findings are somewhat similar to those found in a

Swedish study (Kristensson-Hallstrom & Elander 1997).

Parents used different strategies to ensure they received

adequate and appropriate support, including (i) relinquishing

all care to the staff; (ii) trying to retain a measure of control

over their child and (iii) insisting that they know what is best

for their child. Parents described five strategies they used to

ensure their needs were met: avoiding making themselves a

nuisance to the nurses, being positive towards the staff,

asking questions, ensuring they were as prepared as possible

for whatever might happen during the child’s admission and

informing the staff about their expectations. This study

would be difficult to replicate now, as models of care have

changed and operations such as hypospadias repair are often

performed as day case surgery. This, however, highlights how

much more research into parent participation and family

centred care, and on these changing patterns of hospitaliza-

tion, is needed.

Negotiation between parents and nurses was characterized

by key elements in effective parent–nurse interactions,

including establishing rapport and sharing the child’s care

(Espezel & Canam 2003). These were influenced by the

parent’s expectations of the nurse and parents reported

changes in the nurses’ approaches as the child’s condition

changed. The interactions were often not collaborative and

could be influenced by former knowledge of the family.

Similarly to Darbyshire’s earlier work, which suggested that

family centred care is a wonderful ideal but difficult to

implement, this study suggested that collaboration models of

care may be expressed as being the best way to care for

children and families, but may not necessarily be effectively

used.

In an attempt to define parental participation in nursing

care, Evans (1994) taught mothers to give intravenous

antibiotics to their children in an oncology unit and found

several theoretical constructs which included regaining con-

trol through negotiation, participation to enhance coping,

overcoming anxiety with participation, (though participation

itself could produce anxiety), the importance of timing when

the parent feels ready to take over elements of care, the

children’s appreciation of the involvement of their parent,

and the need for nurses to confront their own negative

attitudes towards parental participation. The central stated

assumption in this study, that while parental participation is

beneficial for the child, it ‘has undoubtedly evolved due to

low staffing levels’ (Evans 1994, p. 477) could be questioned,

though a critical approach may ensure that the possibility of

an implicit truth in this will not be denied.

In a study of parent participation in British hospitals,

Callery and Luker (1996) found that parents were reluctant

to criticize the hospital staff, often qualifying their statements

by explaining that the wards were understaffed. This has

some resonance with the work of Kristensson-Hallstrom and

Elander (1997), where negotiation was used by the parents to

ensure theirs and their child’s needs were met. The authors

thought that questionnaire type surveys limited the choices on

which the parents could comment, while qualitative methods

provided opportunities for parents to comment on anything

they wished. However, interviews can also be biased, are

costly and labour intensive and not a practical option for

most health facilities.

Roles

Roles of both parents and staff within interactions that took

place in hospital during a child’s admission were discovered

to be important, flexible and changed from the roles normally

held by both groups. Kawik (1996) demonstrated that

partnership was more likely to occur on an ad hoc basis

rather than as part of planned care. Parents often did not feel

equal partners, as they felt they lacked skills, required more

information and often had to glean that information from

other parents rather than the nurses. The role of the nurse as

gatekeeper for the child and family was evident. The design of

this study is somewhat problematic as responses between

nurses and parents cannot be compared, as the data collec-

tion techniques from each group were quite different and

there were over four times more nurses in the sample than

parents.

A study of parental participation in Brazil showed parallels

in parents’ and nurses’ work in caring for hospitalized

children (de Lima et al. 2001). Once the mothers had become

socialized into the ward and educated about the care of their

children, the role of nurses as gatekeepers obtained, mothers

L Shields et al.


were relegated to the ‘manual’ while the nurses carried out

the ‘intellectual’ work, reflecting a Marxist division of labour,

which permitted no cognisance of the ability, skills and

knowledge of the mother to provide the best care for her

child. Mothers were seen to be relegated to more menial tasks

while the nurses kept control by planning and co-ordinating

care. This valuable work provides insights into parental

participation in countries whose main language is not the

predominant English and could form the basis for cross-

cultural examinations, especially as the research was thor-

ough and well designed.

Cultural factors were largely influential in a study, which

was an examination of the care of children in four countries,

Australia, UK, Indonesia and Thailand. Vignettes were used

to initiate discussion about different aspects of parental

involvement in hospital care (Shields & King 2001a,b). The

most commonly referred to themes for staff in the two

developed countries were communication, parents participat-

ing and culture; while in the developing countries commu-

nication, the need to meet the child’s psychosocial needs,

extended family and work (important in countries where

there is no social security and parents cannot leave their jobs

to care for a sick child) were the most commonly mentioned.

The parents’ responses differed slightly. Communication was

still the theme most commonly referred to in the developed

countries, while the child’s illness, the other children in the

family and that parents stayed predominated. In the two

developing countries, the medical treatment and curing the

illness were most often mentioned, while the other children

and again, work, were cited often. This study showed the

strong influence of culture on the way children are cared for

in hospitals and in parents’ and staff’s perceptions of their

roles, expectations and perceptions of family centred care.

While the work covered four countries, it would be beneficial

if it could be replicated in other countries, for example Africa

or perhaps Arab countries to determine degrees of influence

of culture and its constructs such as class and religion.

One study was found which encompassed both the nego-

tiation and role themes and is worth examining in some depth.

Callery and Smith (1991) used the critical incident technique

to examine the extent of negotiation with parents used by

nurses in their interactions with parents of hospitalized

children. The question of whether nurses choose to educate

parents or negotiate with them as to what their role should be

was identified as an important one for the relationship

between nurses and parents. The respondents (registered,

auxiliary and nursery nurses) were asked to provide written

descriptions of two incidents, one where they felt that a parent

had wanted more involvement in their child’s care and one

where the parent was perceived to want less involvement than

they already had. Responses, which were the nurses’ descrip-

tions of his/her own team’s responses, were categorized into

two levels reflecting the ‘more’ or ‘less’ involvement of the

parents. Sub-categories were then described.

Three categories were found: ‘encouragement’, ‘explanation

and advice’ and ‘negotiation’. Within the ‘encouragement’

category, three sub-categories were described: (i) ‘encourage-

ment as reinforcement’ where the nurse reinforced the beha-

viour of the parent, (ii) ‘reluctant parent encouraged’, where

parents were supported to behave in a way previously avoided

by the parent and (iii) ‘parent encouraged to be less involved in

care’, described as similar to (ii), but where parents were

assisted to take a less active role in the care of their child.

Within ‘explanation and advice’, three sub-categories were

found: (i) ‘explanation…of nurses’ view of what is best…’ was

thought to occur when the nurse gave the parents advice about

his/her perception of what was best; (ii) ‘explanation about

policy’ provided parents with knowledge of how they were

expected to behave in light of official hospital policy and

(iii) ‘explanation…to reassure an anxious parent’ was used to

relieve a parent who was anxious or upset.

The ‘negotiation’ category contained subcategories of (i)

‘negotiate skill to be learnt’, which encompassed coming to

agreement with parents about necessary knowledge transfer

in relation to skills which could aid the parent in the care of

the child; (ii) ‘negotiation of the distribution of work/

responsibility’, which involved agreement about distribution

of work (of caring for the child) between nurse and parent

and (iii) ‘negotiation of care’, which included the nature of

the care delivered.

This paper, while not strictly a qualitative approach, used

critical incidents to examine how nurses feel about the role of

parents in the hospital. The grade of staff was the only factor

found to be influential, and significant differences were found

in responses between senior level, mid-level nurses and

auxiliary nurses. Although the paper gives no indication of

where the research took place, the staff gradings suggest it

was a UK study. Although no attempt was made to determine

if the subjects held specialist paediatric qualifications, it could

be assumed that due to UK guidelines which require those

who work in children’s departments to hold such qualifica-

tions, that most of the sample would have done so (Depart-

ment of Health 1991). Statistical analysis gave an indication

of differences between the grades as to whether or not each

grade was more likely to use encouragement, explanation/

advice or negotiation, with senior nurses more likely to use

negotiation than encouragement or explanation/advice, while

nurses from the mid-levels were evenly distributed between

the three categories, suggesting a benefit from seniority.

However, 29% of auxiliary nurses used encouragement, 31%



used explanation/advice and 40% used negotiation. This

result was overlooked in the paper and because auxiliary

nurses have less education than the registered nurses, would

suggest that seniority or education were not the only

contributing factors.

Cost

Callery’s work has encompassed both the needs of nurses

and the needs of parents during a child’s hospitalization, and

important amongst those needs is costs, both financial and

emotional (Callery 1997). Apart from lack of income because

the parents took time off work during and after a child’s

hospitalization, other costs such as providing drinks for the

child and food for themselves became burdensome. Care of

siblings was another cost, either financial, or social, such as

time ‘borrowed’ from relatives who cared for the other

children. Parental participation was shown to be costly to

nurses as it requires time to facilitate the necessary commu-

nication between parents and staff and support for the

parents, but is rarely recognized as a part of a nurse’s

workload. Being a co-client was problematic for both

parents and staff, with the perceived need by the hospital

staff to retain detachment and the efficiency needed for work

patterns conflicting with the roles of parents who have been

socialized to care for their children. There was little clarity

about parents’ roles and parents seemed to be cared for an

on ad hoc basis, though there was an emphasis on the need

of the parents for care, and for nurses to be able to provide

that care. Callery pointed out that, if nurses’ work in

supporting and caring for parents was more visible, then the

potential for role conflict in the care of hospitalized children

would diminish and costs from those conflicts would be

ameliorated.

Limitations

While our searches were exhaustive, we may have missed

some research about FCC, particularly from studies which

were conducted in the early years of its development and of

which no electronic evidence is available. Hand searches were

done, but it is impossible to be sure we found everything.

Team members often disagreed about which studies met the

criteria for the Cochrane protocol, but consultation and

negotiation resulted in these 11 being included. The strict

inclusion/exclusion criteria were used as quality markers for

the studies. Cochrane systematic reviews are much easier to

conduct if the intervention under examination is discrete and

readily measurable and the difficulty of doing this for a

sometimes nebulous intervention such as FCC is proving to

be one of our main hurdles. To overcome these problems we

have been rigorous in our negotiations and decisions about

which studies to include. This explains why only 11 studies

are included here, when it may seem that there are far more

qualitative studies on FCC. Most of the studies (64%) were

conducted in the UK, and we found no qualitative studies

from the US which met the inclusion criteria.

Conclusion

Eleven qualitative studies found during searches of the term

‘family centred care’ were reviewed and summarized. Their

findings indicate that negotiation between staff and families,

and perceptions held by both parents and staff roles

influenced the delivery of FCC. A sub-theme of cost of FCC

to families and staff also was discovered and this included

both financial and emotional costs. The papers generate more

questions than they answer, always a function of good

research. These studies were done between 1991 and 2003,

and over that time practices have changed in healthcare

facilities. Day case procedures are widespread. While they

reduce costs in hospitals, shorten waiting lists and ameliorate

the risk of hospital-acquired infections, research is needed

into the real cost to families of having a heavy responsibility

of a postsurgery child (and this is equally pertinent for adults)

for whom they have to care with little or no training and only

minimal support. At this stage, we have no real idea of what

this means for families.

Evidence is emerging that parents are feeling imposed upon

by nurses who take their participation for granted. Coyne’s

(2003) research, while not included here, shows that the idea

of parental resentment first found by Darbyshire in 1994, is

growing. As lifestyles continue to change, as parents have

increasing expectations of their abilities to hold down a job

and rear children, and as the number of single parent families

rises in developed countries, so such attitudes will require

ever deeper and more substantial investigation to provide

evidence to guide practice. It is incumbent on us to ensure the

care of families in health services will develop to provide real

family centred care.

Acknowledgements

This work has been supported by a Telstra Foundation

Community Development Fund Australia, the Royal

Children’s Hospital Foundation (R916–011), the Centre for

Women’s Studies – Women’s and Children’s Health, Mater

Mother’s Hospital Brisbane, Australia and the University

of Limerick Ireland. Thanks also to Dr Megan Prictor,

Dr Sophie Hill and the staff at the Cochrane Communication

L Shields et al.


and Consumers Review Group in Melbourne, Australia, for

on-going assistance with the associated review. For support

and help with searching we thank the staff of the Mater

McAuley Library, University of Queensland, Australia.

Thanks for assistance to Dr Leigh Davis, School of Nursing,

Queensland University of Technology and Ms Vicki Flenady,

Perinatal Data Unit, Mater Mother’s Hospital, Brisbane

Australia.

Contributions

Study design: LS, JP, JH; data collection and analysis: LS, JP,

JH; manuscript preparation: LS, JP.

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Family centred care: a review of qualitative studies

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