Acute childhood illness at home: the parents' perspective

Acute childhood illness at home:the parents' perspective

Sarah J. Neill MSc BSc PGDE RSCN RGN RNT

Senior Lecturer in Children's Nursing, Centre for Healthcare Education,

Nene University College, Northampton, Northampton General Hospital NHS

Trust, Northampton, England

Accepted for publication 17 September 1999

NEILLNEILL S.J. (2000)S.J. (2000) Journal of Advanced Nursing 31(4), 821±832

Acute childhood illness at home: the parents' perspective

This critical review of British literature explores the phenomenon of acute

childhood illness at home from the parents' perspective. The Literature was

searched using four CD-ROM databases: CINAHL, MEDLINE, ASSIA and

PSYCHLIT, augmented by hand searching of current journal issues. Sande-

lowski's (1995) stages of qualitative data analysis were used to develop a

rigorous approach to conducting qualitative overviews. The majority of child-

hood illness is of short duration and takes place in the child's own home. Yet

the research which addresses this area is limited. Mothers constantly monitor

their child's health, identifying illness as a change in behaviour of the child

from their perception of normal. Their usual response to illness is nonprofes-

sional care, including general nursing care and òver the counter'. When

mothers do seek help this is usually from the family doctor. Mothers are often

dissatis®ed with the help and advice they receive. This is partially explained by

the mismatches which occur concerning the perceptions of mothers and of

health care professionals regarding appropriate use of services and the needs of

these mothers and their children. The literature reviewed indicates a need to

address the service users perceptions of the services provided. Areas where

further research is required are identi®ed.

Keywords: acute illness, minor illness, common childhood illness,

parents, families, lay knowledge, literature review, qualitative overview,

general practitioners, primary health care

INTRODUCTION1

Children under 16 years comprise 20% of the population

(Central Statistical Of®ce 1994), 19% of consultations with

doctors in general practice and 15% of consultations with

practice nurses (McCormick et al. 1995). Acute childhood

illness constitutes a high proportion of child consultations,

with the most common reason for consultation being

diseases of the respiratory system Ð 27á6% of consulta-

tions at both 0±4 and 5±15 years (Health Committee 1997).

Yet research which explores parents' experiences, suggests

that families who consult health care professionals for help

and advice when their child is acutely ill, represent a small

proportion of all childhood illness at home. Between 59

and 99% of all episodes of acute childhood illness at home

are reported to be managed without recourse to health

professionals (Mayall 1986, Holme 1995).

Despite the fact that the vast majority of childhood

illness at home is acute in nature, research regarding

Correspondence: Mrs Sarah J. Neill, Beech House, Rectory Hill,

Cranford, Kettering, Northants, NN14 4AH, England.

E-mail: [email protected]

Ó 2000 Blackwell Science Ltd 821

Journal of Advanced Nursing, 2000, 31(4), 821±832 Integrative literature reviews and meta-analyses

community health care of children has, to date, focused

around the chronically ill or high dependency child (e.g.

Derouin & Jessee 1996, Richardson et al. 1992, Copeland

& Clements 1993, Hill 1993, Whyte 1994). `Theoretical

development regarding family process during acute

illness have been limited' (Rennick 1995, p. 258) to the

experience of the hospitalized child (Cleary 1992, Darby-

shire 1994, Neill 1996). This paper changes the focus

towards understanding the phenomenon of acute child-

hood illness at home. The review is limited to the

perspective of the child's parents, as minimal research

has, to date, been located which explores the experiences

of the child or the involvement of the wider family. See

Figure 1 for de®nition of the terms used within the

review.

The broad aim of the review is to explore parents'

experiences of acute childhood illness at home. Speci®c

questions which the review addresses are:

1 How do parents' identify acute illness in their child?

2 How do parents' respond to acute illness in their child?

3 What are parents' experiences of the health services

when their child is acutely ill at home?

Literature review methodology

The nature of the research in this area does not lend itself

to a formal systematic review or meta-analysis because the

research involved includes small-scale qualitative and

quantitative studies. There is considerable heterogeneity

within the literature reviewed in terms of methodology,

consequently, ìt is inappropriate to use quantitative

methods to pool data from individual studies' (Droogan

& Song 1996 p. 21). Such quantitative approaches to the

analysis would also lack philosophical congruence with

the focus of the work Ð to develop an understanding of

the experiences of families when their child is ill at home.

Therefore the method used for this review is that of a

qualitative overview (Droogan & Song 1996, NHS Centre

for Reviews & Dissemination 1996). There is no clear

consensus on the best methods to use to conduct such a

review (NHS Centre for Reviews & Dissemination 1996),

consequently a framework has been developed to facilitate

a systematic and rigorous approach. The process used is

outlined below.

Inclusion criteria· Published research reports and literature reviews in the

last 15 years of English language publications of United

Kingdom (UK) origin.

· Family experiences of acute illness in the child (up to,

but excluding, adolescence) at home.

Material from other countries was excluded, as parents'

experiences are likely to be in¯uenced by the nature of the

health services provided. The age of the child was

restricted as the majority of acute childhood illness occurs

in the 0±9 years age group and health concerns in adoles-

cents focus around other issues.

Literature searching strategiesCD-ROM databases MEDLINE, CINAHL, PSYCHLIT, and

ASSIA, augmented by regular hand searching of current

issues of journals in local libraries and sourcing of

secondary references. The following key words and

phrases were used: child(ren), infant, parent, mother,

father, family, acute illness, minor illness, common

childhood illness, perceptions, experiences, home,

community, primary health care.

Literature reviewing processThe process used to critically review the literature has

been adapted from the method used for qualitative data

analysis (Sandelowski 1995). See Figure 2 for details of

the framework used.

Combining Sandelowski's (1995) stages with Gould's

(1994) critiquing strategy provided a framework which:

a) facilitated the systematic critical analysis of each paper,

whether qualitative or quantitative in nature; and

b) resulted in a rigorous process for synthesizing the

®ndings of the review. This approach ensured that papers

are reported accurately, bias avoided, their validity

assessed and the areas of agreement and disagreement

between research ®ndings identi®ed.

Figure 1 De®nition of terms.

S.J. Neill

822 Ó 2000 Blackwell Science Ltd, Journal of Advanced Nursing, 31(4), 821±832

THE FINDINGS OF THE REVIEW

Twenty-two papers representing 15 research studies and

one literature review were identi®ed which met the

criteria for inclusion in the review (see Figure 3). The

studies reviewed use a mixture of quantitative and qual-

itative methods, with interviews and questionnaires

predominating.

Methodological issues in the research reviewed

Research toolsSeveral of the quantitative studies use structured ques-

tionnaires which appear to have been developed from

professional experience rather than from earlier qualita-

tive research (Wyke et al. 1990, 1991, Clarke & Hewison

1991, Cantrill et al. 1996). Consequently it is not possible

to establish if these questionnaires really measure issues

of importance to families Ð rather, they are more likely to

measure issues professionals believe to be of importance.

These research tools must be viewed as of questionable

validity.

SamplingAcross all the papers data collection was primarily from

mothers. Where studies do include fathers, this is usually

only when the father is the major carer at home. Conse-

quently, even in these studies, fathers form a small

proportion of the sample. There is no readily available

data which explores the role of other family members in

Figure 2 Framework for critically reviewing the literature Ð developing a qualitative overview. Adapted from Sandelowski M. (1995)

Focus on qualitative methods. Qualitative analysis: what it is and how to begin. Research in Nursing & Health 18, 371±375.

Integrative literature reviews and meta-analyses Acute childhood illness at home

Ó 2000 Blackwell Science Ltd, Journal of Advanced Nursing, 31(4), 821±832 823

the care of the acutely ill child at home, although the lay

network is sometimes mentioned by parents as a source of

support and advice.

Sample sizes are on the whole small, as would be

expected in a developing research area, which lends itself

towards qualitative research approaches. However, a

number of the quantitative studies also have small

sample sizes. This makes the use of descriptive statistics,

in particular, somewhat misleading and the demonstra-

tion of statistical signi®cance less valuable. Overall this

Figure 3 Methodology of the research reviewed.

S.J. Neill


means that the results cannot be generalized to other

populations.

Location of data collectionMany of the studies were carried out in the north of

England or in Scotland (Cunningham-Burley & Irvine

1987, Cunningham-Burley & Mclean 1987, 1988, Cunn-

ingham-Burley 1990, Wyke et al. 1990, 1991, Clarke &

Hewison 1991, Morrison et al. 1991, Pearson 1995, Hopton

et al. 1996, Kai 1996a, b). Thus, although many of the

®ndings demonstrated a degree of congruence, it cannot be

concluded that these ®ndings would translate to popula-

tions further south in the UK, given knowledge of the

`Health Divide' from the North to the South of the UK

(Townsend et al. 1992). There is also a strong tendency to

investigate urban and inner-city communities. Only two of

the studies reviewed collected any data from a rural

population (Wyke et al. 1990, Cantrill et al. 1996).

However, these were quantitative studies which did not

explore the perspective or experiences of parents in any

depth.

Speci®c methodological issues relating to individual

studies are addressed within the body of the review.

KEY THEMES

The following key themes were identi®ed from the review:

· Parental perception of the child's minor illness

· Parents' actions in response to illness in their child

· Seeking help from health services

· What do parents want from services?

· Mismatch between the perceived needs of parents and

services provided.

Each theme is explored, in turn, below.

Parental perception of the child's minor illness

A number of studies reveal ®ndings which address the

ways in which parents identify illness in their children.

Within this theme several subthemes emerged: `Normal

health', `Normal illness', `Behavioural change' and Partic-

ular concerns'.

Normal healthParents assess their child's health in relation to what they

perceive as `normal' health for their child (Pearson 1995,

Spencer 1984, Mayall 1986, Cunningham-Burley 1990,

Cunningham-Burley & Maclean 1991, Irvine & Cunn-

ingham-Burley 1991). This sense of normality is based

on the parent's common sense knowledge of minor

childhood illness and speci®c knowledge of their child

(Cunningham-Burley & Maclean 1991, Cunningham-

Burley 1990, Irvine & Cunningham-Burley 1991). Both of

these areas of knowledge develop over time, as the parents

develop in their role as parents, learning about changes

with the development of the child with the ®rst child and

through using the knowledge gained, with subsequent

children (Cunningham-Burley 1990, Irvine & Cunn-

ingham-Burley 1991, Pearson 1995). Thus parents'

concept of normality changes over time.

Normal illnessParents also perceive some kinds of illness as normal for

their child (Mayall 1986, Cunningham-Burley 1990, Irvine

& Cunningham-Burley 1991, McKenna & Hunt 1994). For

example parents in 3 studies (Irvine & Cunningham-

Burley 1991, Spencer 1984, Mayall 1986) attributed many

symptoms of minor illness to teething, a process seen as a

normal part of child development. Alternatively a speci®c

illness may itself be viewed as a normal childhood illness.

McKenna & Hunt's (1994) study of parents whose child

had had chickenpox, found that although the illness

disrupted the family, the illness was in itself considered to

be normal.

Mayall (1986) and Irvine & Cunningham-Burley (1991)

explored the parents' perceptions of the child with a

persistent minor illness and found that these children

were also seen as essentially healthy. These parents

attributed the child's illness to an innate predisposition

in that individual child.

This process of normalizing some of their child's

illnesses, either as an innate part of childhood or as a

particular predisposition in the individual child, may be

one way of maintaining their own image of their child as

`healthy'. Cunningham-Burly & Maclean (1991) proposed

that this is closely linked to the parent's own self-esteem

in their role as parents.

Behavioural changeGiven this tendency to want to normalize illness in the

child, how do parents identify illness in their child?

Parents recognize illness in their child through their

assessment of the child's behaviour (Spencer 1984, Mayall

1986, Cunningham-Burley 1990, Cunningham-Burley &

Maclean 1991, Irvine & Cunningham-Burley 1991, Corn-

ford et al. 1993) which they constantly compare to their

unique knowledge of what is the normal pattern of

behaviour for their child (Irvine & Cunningham-Burley

1991, Spencer 1984, Cunningham-Burley 1990), often

termed as `not his/her normal self' (Hopton et al. 1996,

Cornford et al. 1993).

The behavioural changes of most concern were found to

be changes in eating and/or sleeping patterns (Irvine &

Cunningham-Burley 1991, Cornford et al. 1993), crying for

no identi®able reason (Cunningham-Burley 1990) and

mood changes indicated by being irritable or more `clingy'

than normal (Mayall 1986, Cornford et al. 1993). These

changes in behaviour might be interpreted in several

ways. They might be seen as the precursor of illness, the



result of illness, the problem itself or a problem for the

family in general (Cunningham-Burley & Maclean 1991,

Irvine & Cunningham-Burley 1991). An example of the

latter might be when a child keeps the family awake

through the night. Often, however, a behavioural change is

noted but the child is seen to return to normal the next day

(Cunningham-Burley & Maclean 1991).

Symptoms of particular concernIn the literature reviewed some symptoms of particular

concern to parents emerged. These appeared repeatedly in

different studies. Some of these concerns revolved around

speci®c symptoms that parents had reported as worrying

and as their reason for taking the child to see the doctor.

These were: respiratory symptoms, particularly a persis-

tent cough; a high temperature; and vomiting and pain

(Spencer 1984, Mayall 1986, Cornford et al. 1993, Holme

1995, Hopton et al. 1996, Kai 1996a), especially if the pain

was severe, unrelieved and unexplained (Hopton et al.

1996). Three papers report on two studies based solely

around respiratory problems in children (Wyke et al. 1990,

1991, Cornford et al. 1993) as a result of professional

knowledge of parents' concern with this symptom. Holme

(1995), Cunningham-Burley & Irvine (1987) and Wilson et

al. (1984) all reported that altered breathing and/or

coughing were the commonest reason parents gave for

consulting a doctor.

Another group of concerns that emerged were those

related to media-generated fears. Two papers noted the

effect of new media coverage of an outbreak of meningitis

(Hopton et al. 1996, Kai 1996a). The nonspeci®c nature of

the symptoms which may lead to meningitis makes

assessment of children with these symptoms, particularly

problematic both for parents and for their general practi-

tioners (GPs) (Taylor 1995).

Parents have also been identi®ed as fearing that they

will not recognize serious illness in their children (Kai

1996a). For some parents this was linked to `past frights',

when their child had been diagnosed by doctors to be

much more seriously ill than they had thought prior to

seeking medical advice (Hopton et al. 1996). This `fright'

serving to reduce the parents' con®dence in their own

ability to judge the state of their child's health.

Parents' actions in response to illnessin their child

Monitoring the child's healthParents constantly monitor the state of their child's health

(Cunningham-Burley 1990, Kai 1996a). It is from this

monitoring that parents are able to make their judgement

about the normality or abnormality of the child's state of

health. Cunningham-Burley's (1990) study provides

detailed information about the nature of the monitoring

process through the use of daily health diaries with

parents. However, it has to be noted that both the diaries

themselves and the supportive visits by the researchers

during the period of diary data collection, may have

served to heighten and arti®cially enhance the parents'

monitoring process.

Treating the child themselvesWhat is clear both from Cunningham-Burley & Irvine's

(1987) paper and Spencer's (1984) earlier combined

research report and literature review, is that parents make

every effort to treat the child themselves, although their

®rst response to minor symptoms is to take no action but

to `wait and see'. When symptoms persist their treatment

of the child may consist either of nursing actions and/or

the use of òver the counter' (OTC) remedies (Spencer

1984, Mayall 1986, Cunningham-Burley & Irvine 1987,

Cornford et al. 1993, Cantrill et al. 1996). The majority of

the OTC remedies were already present in the home

(Cantrill et al. 1996).

Home nursing actions included techniques taught to

parents by their GP such as sponging the child with a

fever, steam for croup, plenty of ¯uids for fever or the

child who is not eating (Cunningham-Burley & Irvine

1987). The reference to steam for croup dates this paper as

this technique is no longer recommended due to the risk

of scalds from boiling water. Nursing action identi®ed in

Mayall's (1986) work also included a change in diet/¯uids

for the child, treats, allowing the child to sleep on the sofa

where the parents could observe the child, wrapping or

undressing the child and keeping them indoors. Common

threads were the extra attention and time that the mothers

devoted to their children when they considered them to be

ill (Mayall 1986). This is also referred to by Spencer (1984)

as increased emotional support needed by the sick child.

The most common OTC remedies were analgesia, anti-

pyretics and cough medicines (Cunningham-Burley &

Irvine 1987, Cunningham-Burley & Maclean 1987, Cantrill

et al. 1996, Mayall 1986). All of these studies report a high

use of these easily available remedies. Parents are reluc-

tant to `bother the doctor' (Kai 1996a, Cunningham-Burley

& Maclean 1991) who acts as the gatekeeper to further

medicinal treatments.

Sources of support used by parents priorto calling the doctorTwo main sources of help appear in the literature Ð

pharmacists; and family/friends. Both of these sources are

reported as being used before parents resort to calling the

doctor.

Family and friends. Forty-seven per cent of the ®rst-

time parents in Mayall's (1986) research talked about the

information they received from friends and relatives. This

information included suggested diagnoses, advice on

nursing their child, home remedies and when to refer to

S.J. Neill


the doctor. In both Mayall's (1986) and Kai's ®ndings

(1996a) parents are described as using a `lay network'.

Where this network was smaller and parents did not have

people to whom to refer, an increased use of general

practice services resulted (Mayall 1986). This association

with social support is also highlighted in Reading's (1997)

review of the literature on poverty in childhood. Oakley

et al.'s (1994) research identi®ed that social support for

mothers resulted in better health for their children. This

effect was found to be strongest in families living in

poverty. This focus on the supportive network of family

and friends re¯ects a key theme within the dominant

philosophy of children's nursing Ð the need for children

to be viewed and cared for within the context of their

families (Royal College of Nursing 1995).

Pharmacists. Pharmacists are seen as much less threat-

ening than doctors (Cunningham-Burley & Maclean 1991).

Parents are reported as using the chemist as a source of

information in several studies (Spencer 1984, Mayall

1986, Cunningham-Burley & Maclean 1991, Morrison et

al. 1991, Cantrill et al. 1996, Kai 1996b). The high use of

OTC remedies would seem to support the idea that many

parents use this source of advice. However, when asked

the direct question few parents identify the pharmacist or

chemist as an information resource (Cantrill et al. 1996,

Mayall 1986, Morrison et al. 1991). In Mayall (1986) study

only 3% of parents referred to the chemist as a source of

advice. In addition, Kai's (1996b) ®ndings suggest that

parents who ask the pharmacist are referred back to their

doctor. For the parents, the chemist appears to act as a

bridge between lay and professional responses to illness.

Seeking help from health services

Two broad areas emerged in the literature concerning

parents eventual decision to use health services. The ®rst

provides some insight into the reasons parents decide to

consult health services whilst the second identi®es demo-

graphic trends in parents' use of health services. What

stands out overall is the focus on doctors as the only

source of help available once the resources of family,

friends and/or the local pharmacist are exhausted.

Deciding to calling the doctorSeveral themes emerged in the reasons parents gave for

their decision to call the doctor. These include: abnormal

symptoms (Cunningham-Burley 1990, Hopton et al. 1996),

behavioural change (Hopton et al. 1996, Kai 1996b);

perceived increased severity of illness in their child (Wyke

et al. 1990, Clarke & Hewison 1991, Cornford et al. 1993);

feelings of helplessness or of being unable to cope with

their child's illness (Kai 1996b, Morrison et al. 1991) and

when their own attempts to treat the child have failed

(Cunningham-Burley & Irvine 1987, Hopton et al. 1996).

Kai (1996a) developed a theoretical model from his

qualitative study, which inversely links parents' perceived

threat of the child's illness to parents' sense of personal

control. This model suggests that the greater the perceived

threat to the child's health the more likely it is that a parent

will decide to seek professional help and advice.

Demographic patterns of health service useConsiderable attention has been paid in the medical

literature to the problem, as perceived by health profes-

sionals, of parents who use services most frequently.

However, this `medical problem' needs to be considered

from the perspective of the parents. Aside from the

symptoms of the child's illness, what other factors make

parents more likely to take their child to see the doctor?

The research in this area is mostly quantitative. Conse-

quently, the only conclusions which can be drawn are the

statistical relationships within data, i.e. which groups of

parents are most likely to use general practice services.

Two groups of parents emerged from the literature as more

likely to consult their family doctor with acute childhood

illness at home: those with lower socioeconomic status

and parents from ethnic minority groups.

Lower socioeconomic status. Parents from lower

socioeconomic groups are more likely to present to the

doctor with their child (Gillam et al. 1989). This ®nding is

not surprising as it is known that virtually all aspects of

health are worse in children living in poverty than those

living in af¯uent families (Reading 1997). Approximately

one third of children are living in conditions of poverty in

Britain today (Graham 1994). These children not only

make up a signi®cant proportion of the child population

but will be ill more often (Mayall 1986, Reading 1997) and

according to ®ndings of Watson (1991), Clarke & Hewison

(1991) and Wyke et al. (1990) they will be more seriously

ill than children in more af¯uent circumstances. Saxena et

al. (1999) re-analysis of data from the fourth national

survey of morbidity in general practice support these

®ndings. Spencer's (1984) paper considers the reasons

why socially deprived parents may present with more

seriously ill children. He suggests that these parents are

most vulnerable to breakdown of parenting skills and will

therefore fail to respond to their child's symptoms,

seeking help at a latter stage of the child's illness.

However, Morrison et al. (1991) do not concur with the

®ndings of the latter studies. In their study of children

seen out-of-hours, they found that the high users were

more likely to call the doctor than low users at the same

level of illness. However, this result was obtained by

asking parents to respond to vignettes. Their retrospective

examination of the data collected for each contact did,

however, identify the high user group as more socially

disadvantaged. Given the ®ndings presented above

concerning the relationship between lower socioeconomic



status and poorer health, it would seem that the use of

vignettes may have led to erroneous conclusions.

Ethnic minority groups. Nine per cent of the child

population in the UK are from ethnic minority groups

(Central Statistical Of®ce 1994). One third of the ethnic

minority population consists of children, in contrast to

20% of the total population of the UK. Consequently this

is a signi®cant group of service users, particularly for areas

such as Leicester, which has a high proportion of ethnic

minorities Ð 39% in Leicester City East (Leicester City

Council 1997) in contrast to the national ®gure of 5á5%.

These ®gures are even more relevant when considered in

the light of the evidence that ethnic minorities also have

an increased incidence of socioeconomic deprivation

(Webb 1996). This would lead to higher rates of health

service use per head of the population, due to the

associated increased morbidity. Clarke & Hewison (1991)

found higher consultation rates in Àsian' groups with

increased scores for severity of illness. Watson's (1991)

investigation of health service use during the ®rst year of

life in Tower Hamlets, also found that the Bengali chil-

dren were reported to suffer more severe symptoms/

coughs/colds than children from the indigenous group.

Little information is available concerning the health

beliefs, views or perspective of parents from ethnic

minority groups concerning childhood acute ill health.

Clarke & Hewison's (1991) study conducted in Leeds, a

northern city with a high ethnic minority population, did

identify that ethnic differences in health beliefs do

contribute towards parents decision to consult their GP.

For example different beliefs were identi®ed concerning

the causes of coughs and colds. Indigenous families cited

germs and viruses, whilst òther groups' attributed these

illness to the weather. Interestingly it was the latter òther

groups' who were found to be more likely to consult.

However, the structured questionnaire design means that

parents were responding to a predetermined list, conse-

quently, their views may not be accurately represented.

What do parents want from services?

Whatever reason parents gave for deciding to seek help

from health services, several common themes emerged

which describe what expectations parents have of these

services. The most dominant theme is that of the parents'

desire for reassurance, closely followed by their desire for

information about their child's illness and care, their wish

to have their views respected and their competence as a

parent recognized and ®nally, for some parents, the desire

for medication for their child.

ReassuranceParents commonly reported that their primary need when

seeking advice from health care professionals was for

reassurance (Mayall 1986, Clarke & Hewison 1991, Irvine

& Cunningham-Burley 1991, Morrison et al. 1991, Corn-

ford et al. 1993). They wanted the doctor to con®rm that

they had taken all the necessary steps Ð that they had not

missed anything serious (Irvine & Cunningham-Burley

1991). One respondent in Cunningham-Burley &

Maclean's (1991, p. 37) paper is quoted as saying:

R28: I would prefer that the doctor would say `You're doing

everything you can. I can't help you anymore', but at least you are

settled in your mind and you've been and there is nothing else, so

you can just come back and get on with it.

In contrast, for some parents the reassurance came in the

form of a prescription which was seen as con®rming that

their child was ill (Kai 1996b) and therefore warranting

the attention of the doctor.

InformationWilson et al.'s (1984) study investigating GP consultation

for acute illness in infants, identi®ed that 51% of parents

recalled advice being given. Unfortunately, this study was

designed in an attempt to develop a list of major and

minor symptoms helpful to GP's, rather than to parents.

Consequently, they do not identify whether parents could

recall what advice had been given, whether parents

wanted advice from the consultations, or whether the

advice given was what the parents desired.

The desire for information is, however, identi®ed in

other research. Parents are reported to want information

about their child's illness and how to best to care for their

child (Mayall 1986, Cunningham-Burley & Maclean 1991,

Kai 1996b). In Kai's (1996b) study, parents sought infor-

mation from sources other than health care professionals.

These parents found that they had learnt more speci®c

information about children's illness from the media, in the

form of parenting magazines, television dramas and

publicity campaigns. This provides evidence of a more

positive role for the media than just providing frightening

material about outbreaks of disease.

Research in the ®eld of caring for the hospitalized child,

has found repeatedly that parents want more information

about their child's illness and care (e.g. Neill 1996, Kna¯

et al. 1988, MacDonald 1988, Evans 1994). Some parents

have been identi®ed as actively seeking information to

enable them to cope with their child's hospitalization

(Neill 1996, Kna¯ et al. 1988). In the former study,

receiving information had the effect of increasing parents'

sense of control. Conversely, when information was with-

held they experienced a loss of control (Neill 1996). Thus

it is not surprising that parents resort to the same coping

mechanisms when caring for an ill child at home.

Recognition of maternal competenceMothers in Cunningham-Burley & Maclean's (1991)

paper are described as `feeling stupid' or `silly' when

S.J. Neill


they consulted their family doctor about their child's

illness. Cunningham-Burley & Maclean (1991) explain

this sensation as related to a possible threat to the

mother's self-esteem, when their ability to mother their

child is open to scrutiny, as it is implicitly when they

need to call on the doctor to help them to care for their

sick child.

Other studies in the area also found that parents were

unhappy with their interactions with their child's GP.

Mayall (1986) found that some mothers (22%, n� 135) felt

that the doctor did not respect their views. Kai (1996b)

found that parents felt their con®dence had been under-

mined by remarks from professionals. While Hopton et al.

(1996) report that some patients felt that they had not been

taken seriously. Although not all the latter ®ndings

originate from parents Ð half the sample concerned adult

patients. Given these reports, the desire to have their

competence as a mother recognized, as identi®ed by

Mayall (1986) and Cunningham-Burley & Maclean (1991)

is predictable. Mothers are reported to want their concerns

to be treated seriously and their knowledge of their child

and the treatment they had already given to be recognized

by the doctor. Interestingly, such comments were not

made when the mothers discussed their interactions with

other health professionals.

MedicationSome of the parents in the research reviewed stated that

their expectations of their consultation with the doctor

was for a prescription (Mayall 1986, Cornford et al. 1993).

Wilson et al.'s (1984) audit of the outcome of consulta-

tions for infants with acute illness identi®ed that 81% of

parents left the surgery with a prescription. Yet in

Cunningham-Burley & Irvine's (1987) paper, mothers are

cited as not expecting a prescription, the àll clear' being

viewed as of more importance. Parents from ethnic

minority groups were, however, identi®ed as more likely

to want prescribed treatment (Clarke & Hewison 1991,

Watson 1991). In Watson's (1991) study the Bengali

mothers are reported to value prescribed treatment highly,

whilst in Clarke & Hewison's (1991) research Muslim

parents were identi®ed as the most likely to want

medications, when compared to White, Sikh and Afro-

Caribbean parents.

Kai's (1996b) study explored the desire for medication

further, through an examination of parents beliefs about

treatment. He found that parents' desire for antibiotics did

not relate to the cause of illness Ð parents did not

understand that antibiotics would be useless against viral

illness Ð but to the parents' perception of the severity of

their child's illness. Cornford et al.'s (1993) ®ndings

support Kai (1996b), as half the parents in this study are

reported to want antibiotics (to kill `germs' and break up

phlegm), especially if the illness was more severe. These

®ndings re¯ect the commonalities between studies

outlined earlier concerning how parents make sense of

their child's illness.

Overall, however, parents did not expect to leave the

surgery with a prescription (Cunningham-Burley & Irvine

1987, Clarke & Hewison 1991), although many received

one (Wilson et al. 1984). In Clarke & Hewison's (1991)

research, when parents were asked what they expected to

get from the doctor, fewer than 20% of families mentioned

antibiotics. The authors state that this is `contrary to a

popular myth among health care providers'. There is an

obvious mismatch here between the desires of parents and

what the GP's provide.

Mismatch between the perceived needsof parents & services provided

This mismatch is illustrated in two ways in the literature

reviewed above: doctors' over-estimation of parents'

expectations of a prescription (Cunningham-Burley &

Irvine 1987, Clarke & Hewison 1991); and parents' lack

of understanding of the rationale for the use of antibiotics,

linking severity of illness, rather than bacterial origin as

the cause of illness, with the need for antibiotics (Kai

1996b, Cornford et al. 1993). A further con¯ict cited in the

latter study, also concerns parents' lack of understanding

of the doctor's diagnostic processes:

Mothers often noted (sometimes with disbelief and even sarcasm)

that the cough appeared chesty to them but that the doctor said

the chest was `clear' after listening with a stethoscope. Cornford

et al. (1993, p. 195)

In addition to these misunderstandings, mothers in Irvine

& Cunningham-Burley's (1991) research, comment that

their competence to care for their child is questioned and

that they are made to `feel stupid' when they consulted the

GP. Callery (1997) discusses this con¯ict between

maternal and professional knowledge at some length,

identifying the power relationships which exist between

lay and professional groups. Consequently this discussion

will not be explored again here. It is evident however, that

considerable mutual dissatisfaction is likely to exist (Kai

1996a).

DIRECTIONS FOR FUTURE RESEARCH

Although the research reviewed answers the questions set

(see Figure 4 for an overview of the answers to the

questions set for the review), the depth of the under-

standing of parents' and families' experiences when their

child is acutely ill at home is limited, as is the general-

izability of the research.

There is minimal evidence gathered from any family

member other than mothers. The lay network is referred to

but not explored. Given that the majority of childhood

acute illness at home is managed by families without



reference to health care professionals, this lay network

needs further investigation. There is scope here for

research which explores the dynamics occurring in fami-

lies during childhood illness and the relationship to help

seeking behaviours and health service use.

The experiences of families in the South of England and

those in rural areas are under-represented across the

research. Qualitative research with minority ethnic groups

is absent, re¯ecting the tendency for qualitative studies to

focus on the dominant white population. Generally much

of the research to date, is grounded in a Eurocentric

understanding of illness (Webb 1996). There is a need to

explore the experiences and perceptions of rural commu-

nities and ethnic minority groups in relation to acute

childhood ill health, if services are to be designed to meet

their needs. This review has concentrated on the literature

from the UK. Clearly there is also a need in an age of

globalization for international and cross-cultural studies.

The role of other health care professionals does not

appear within the research. The impact of new service

developments such as: NHS Direct, GP co-operatives,

ambulatory care centres and the expansion, albeit slow, of

Community Children's Services, need to be assessed for

this client group.

Research is needed which will help to direct the future

development of services designed to meet the needs of

services users, within the context of the resource

constraints in today's British National Health Services

with its emphasis on clinical effectiveness and ef®ciency.

Services targeted to meet the needs of child and families

as identi®ed by the clients themselves have the potential

to facilitate the development of effective services.

Acknowledgements

Professor Jackie Campbell, Head of Research and Consul-

tancy, Centre for Healthcare Education, University College

Northampton.

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Acute childhood illness at home: the parents' perspective