Blackwell Science, LtdOxford, UKCCHDChild: Care, Health and Development0305-1862Blackwell Publishing Ltd, 2003January 2003291Original ArticleDiagnostic disclosure and

paediatrician sensitivityR. Davies

et al
.

Original Article

Parents stories of sensitive and insensitive

care by paediatricians in the time leading
up to and including diagnostic disclosure
of a life-limiting condition in their child
Ruth Davies, Bryn Davis and Jo Sibert
Department of Child Health, University of Wales College of Medicine, Cardiff, Wales
Accepted for publication 23 October 2002

Abstract

Keywords
diagnosis, paediatricians,
sensitive, insensitive,
humanistic, double
obligation

This study explored parents experiences of care by paediatricians in the time leading up to and
including diagnostic disclosure of a life-limiting condition in their child.
Research methods Qualitative exploration using in depth interviews with a purposive sample of 30
families whose child was diagnosed with a life-limiting condition.
Results Parents stories centred upon their need to have their concerns and needs as parents
validated by paediatricians. Demonstrable qualitative differences were shown to exist between the
sensitive and insensitive clinical practices of paediatricians. Parents stories identify the need for
clinical practice to be based upon a humanistic approach to care. These also identify how sensitive
paediatricians achieved this ideal through meeting the double obligation of combining technical
skills with an understanding of their needs as parents.

Introduction

Correspondence:
Dr Ruth Davies, Caerleon
Education Centre, University
of Wales College of Medicine,
Grounds of St Cadocs
Hospital, Caelon, Newport
NP18 3XR, UK
E-mail:
daviesre@cf.ac.uk

Diagnostic disclosure to parents by paediatricians

has been a focus of concern and research enquiry
over the last 20 years. Major studies that have
examined disclosure of muscular dystrophy (Firth
1983), life-threatening illnesses (Woolley et al.
1989) and severe disability (Turner & Sloper 1992)
have shown that parents are not always satisfied
with the manner in which this is given. Reasons for
dissatisfaction have included the blunt manner of
paediatricians as well as the delay, denial and evasion parents have experienced while awaiting
results. Dissatisfied parents have also reported
unsympathetic and brief diagnostic interviews not
always conducted in private with no time to ask
questions. Satisfied parents, by contrast, have

reported open, sympathetic and direct diagnosis in

private with paediatricians who gave them time to
take in the news as well as repeat and clarify information for them
Previous studies have highlighted that most parents suspected something was wrong before actual
diagnosis but that their initial concerns about their
child have not always been taken seriously by paediatricians (Turner & Sloper 1992) or even dismissed (Quine & Pahl 1987). Studies have also
highlighted that the paediatricians response to parents is influenced by the familys social class and
educational background as well as severity of
childs condition (Sloper & Turner 1993). All these
studies have emphasized the importance of good
communication and interpersonal skills and guidelines to improve clinical practice have been made.

Original Article
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R. Davies et al.

Recent studies seem to show these are bearing fruit.

A study by Sloper (1996) of parents given the diagnosis of cancer established that the majority were
satisfied. Pearson et al. (1999) from their study,
which made a comparison of recent disclosure with
that given 1015 years previously, established an
increase in parental satisfaction too. Nevertheless,
some parents remain dissatisfied and there is a continuing need to research this area of care and to
learn from parents stories in order to improve clinical practice.

Research design and method

Qualitative methods were used to explore parents
lived experiences. The sample, representative of
family life in the United Kingdom today, included
23 married couples and seven single parents. Parents living in South Glamorgan (Cases SW 115)
and the West Midlands (A115) were identified by
professional colleagues and invited to take part by
letter. Ethical approval was given by the local ethics
committee. Interviews were offered outside of
working hours to give working parents and in particular fathers the opportunity to take part. In all,
14 couples took part (nine from the West Midlands
and five from South Glamorgan) and 16 mothers
were interviewed alone. Families were predominantly working class and four met the criteria for
social exclusion.
In depth interviews were carried out in parents
homes. Interviews and field notes were audio taped
and transcribed verbatim. Through interpretative
data analysis, assisted by NU*DIST software, a number of themes emerged and identify how parents
lived experiences were affected both positively and
negatively by the sensitive and insensitive clinical
practices of paediatricians.

All parents knew something was

wrong with their child
By condition, the majority of families in this study,
12 in all, were given the diagnosis of severe cerebral
palsy for their child. These parents had experienced
the crisis of a life-threatening birth or their childs
failure to respond to intensive medical treatment
following a life-threatening infection. For parents

of children diagnosed with lethal genetic disorders,

the realization that something was wrong was more
gradual and insidious. Their suspicions were
aroused as their child failed to achieve developmental milestones or having achieved these began
to regress. All these parents sought help from paediatricians and even the worst news, that is, diagnosis of a life-limiting condition with no hope of
cure was needed by them. Diagnosis validated their
parental concerns and understanding of their own
child and meant they could make plans as a family:
The first time we were told his condition he
was 14 years . . . you cant say it was a relief
but in a way it was because we wondered
what would become of him in the years to
come. Who would look after him? In a way
we were thinking well at least we can look
after him for as long as hes got. It was nice
to have a name.
(mother of son diagnosed with Hallervorden
Spatz Disease)

Parents and medical terminology: It was like an

alien word
For parents medical terminology was not always
understood and to some was incomprehensible.
This was understandable for until then medicine
had no place in their life world. One mother in
recounting being told the medical term cerebral
palsy for the first time described it as an alien
word for as she noted we never had it in our family
before. Medical terminology may have been
incomprehensible but the clinical practices of paediatricians towards them during these stressful and
life changing events were. What mattered to them
was whether the paediatricians they sought help
from were sensitive to their needs as a parent and
as a family. This is what they focused upon and this
is what they remembered.

Sensitive paediatricians and the double

obligation principle
Sensitive practitioners met the Gadamerian ideal
(1996) of the double obligation owed by doctors
to those who seek help from them. Gadamer, the

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Diagnostic disclosure and paediatrician sensitivity

philosopher, has described this as the ability to

combine technical skills with participation in the
life world of patients, or as in this study, parents as
carers. These were able to enter this life world and
understand needs from a parents perspective as
illustrated in this story (Case A9) told by parents:
Case A9: He said Go home and have the best
Christmas you can have
First meeting with parents following referral
from GP
Mother: He said he would look into it and
sent her for a C.A.T Scan and there was this
build up for Christmas and we got the results
back on the 22nd of December about the
brain scan
R: They were normal?
Mother: No, they came back abnormal there
was a great big matter over the brain and he
said like it was the 22nd of December. He
said, Go home and have the best Christmas
you can. and he phoned us up over Christmas, he was really nice and then he got her
booked in for the Thursday after Christmas
to have a lumbar puncture done and some
more blood tests and things. and that was
the actual thing that diagnosed it and we
were told like it was the new year and we
were told on the second of January.
R: How did he handle that do you think?
Mother: He was really good wasnt he? (to
father)
Father: Very well, as best as you can in handling that sort of situation we couldnt have
asked for better. Even now if M goes into
hospital even though shes not under him he
will always come and see her
(parents of child diagnosed with Metabolic
Leukodystrophy)
Paediatricians such as these, listened to parents,
took their concerns seriously and were able to
respond with human sympathy and understanding. These were technically competent too and
expedited investigations or referrals to other consultants. During the initial consultation they established good working relationships with parents as
illustrated in this story, Case A8. This meant par-

79

ents felt able to confide in him later on about problems they had in their own relationship because of
their caring responsibilities.
Case A8: Sensitive and family focused care
First meeting with parents following referral
from GP
Mother: He said he thought there was something wrong just by looking at E and he said
he would do some blood tests and he would
get the tests back in six weeks. We had to take
E in for these tests and they had to wrap him
up in almost a straight jacket. and we took
him onto the childrens ward and he (the
paediatrician) really filled up and he said Its
a shame
Diagnosis was given as promised six weeks
later of MPS
Mother: and he had obviously planned what
he was going to say and I made it quite difficult for him really, he was so lovely and we
just went to pieces didnt we (looking at husband who nods in response)
Paediatrician visited the family at home the
next day. On a later occasion parents confided about how their caring responsibilities
were putting a strain upon their relationship
and the mothers reluctance to take up respite
at a childrens hospice.
Father: I told him . . . He said (paediatrician)
Respite is the most important thing it will
either make or break a marriage. The ones
who dont accept help go under. Parents
accepted respite that has helped them as a
family. Later on in the same interview when
discussing their childs medical care and this
paediatrician:
Father: Hes a good bloke
Mother: Hes like our friend
(parents of child diagnosed with Sanfillipo
Syndrome)

Parents attrition stories

In contrast, stories from four families identified
they were on the receiving end of insensitive care.
One couple, first time parents, were given the diagnosis during the middle of a ward round. As illus-

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R. Davies et al.

trated by their story (Case A7) the technocratic

approach of the paediatrician led to depersonalization of the experience for both him and them as
parents:
Case A7: I thought it was absolutely
appalling
Father: I thought it was absolutely appalling.
It was very blunt. I mean I think the way it
was done took a long while for it to sink in
because it was blunt. I know it sounds a bit
of a contradiction but it was told in a very
matter of fact way with no feeling. The bedside manners were appalling. The facts were
laid out as black and white and as plain as
they could be. They called us in and said
Right weve had the results and she has
severe brain damage which means M will
never walk, she will never talk, she will never
be able to do anything for herself and that
was it . . . (pause as father became distressed
and tearful)
R: (stunned and searching for words) Oh
Gosh, and just left the two of you there?
Father: Yes, and the nurse came in and she
was very good but this particular consultant
his manner was all . . . I think that was partly
the reason he did it because he didnt want
to break down. He was trying to protect
himself I think as much as us but in doing
so . . . thats something we (as parents) have
talked about a lot.
Mother: and then they were off doing the
ward round. They prescribe drugs and then
they are off and they know they have left
sheer and utter devastation to the family.
(parents of child diagnosed with Severe Cerebral Palsy and spastic quadriplegia)

Delayed diagnosis: a consequence of

insensitive care
As identified by three parents stories insensitive
care was in effect inexpert care leading to delayed
diagnosis. These families would be classified as
working class and supports the claim that paediatricians are influenced by the social and educational background of families. As the researcher

recognized these children had serious developmental delay. However, their real concerns as parents,
in particular those of mothers who were also their
full time carers, were dismissed. One mother, given
a diagnosis of developmental delay was not convinced:
I used to look in the books and I said when
the doctor was doing her check. I said, I want
his blood checked.
Tests confirmed otherwise but the mother
was not impressed with the information
given
They said he would be all right until hes 11
(scornfully). I could have hit her if we hadnt
insisted . . . theyd never have found out.
(mother of son eventually diagnosed with
Muscular Dystrophy)
For other parents given the diagnosis of learning
difficulties for their son two years previously serious problems developed within their relationship.
Whilst the father accepted this his wife would not
and unable to cope with her intransigence he left
the family home. At the mothers insistence her son
was referred to a consultant in a major teaching
hospital. As identified by her story (Case SW 4)
actual diagnosis came as relief to her.
Case SW 4: it was only a blood test
Mother: I mean it was relief really. From
three or four years he was looked at as if he
had two heads by people who are supposed
to be in the know . . . its so frustrating . . . its
unbelievable. The annoying thing is that it
was only a blood test. It should have been
done at 18 months when he wasnt walking
(voice raised)
Talking of the childs father:
Mother: He felt terrible, he thought the doctor was right, hed said there was nothing
wrong with him only this learning difficulty.
Hed said You dont care for him
Parents now feel supported by consultant
paediatrician who ordered tests and gave
diagnosis sensitively, the specialist nurse and
local childrens hospice where they have regular respite as family

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Diagnostic disclosure and paediatrician sensitivity

(Mother of son diagnosed with Muscular Dystrophy)

Likewise, a single mother who met the criteria
for social exclusion, was also frustrated by the diagnosis of behavioural problems given to her daughter three years previously.

A story of DIY diagnosis

After reading a newspaper article describing a child
with similar signs and symptoms to her daughter
she contacted a parent self help group. A urine
sample from her daughter was sent by post and she
was given diagnosis by telephone two days later.
Working class or not, this mother like the previous
two, knew how to shop around for a diagnosis that
made sense to her as a parent. Nevertheless, anger
towards the insensitive paediatrician remained and
in their final consultation
The first time we went to see him after she
was diagnosed was the only time she was
with him longer than two minutes and he
had the cheek to say Yes, you could see she
was classic MPS. That made me so angry
(mother of daughter diagnosed with Sanfillipo
Syndrome)
None of those responsible for delayed diagnosis
apologised to parents. Reflecting their insensitivity
these seemed oblivious to the serious consequences
this had had upon the child, the parents or family
as a whole. Even after correct diagnosis they persisted in treating parents in a dismissive and offhand manner. It is hard not to conclude that this
authoritarian manner acted as a smokescreen for
the less knowledgeable to hide behind and that this
was recognized by parents themselves hence their
immediate decision to transfer elsewhere. Sensitive
paediatricians not only acknowledged but
respected parental knowledge and were willing to
work in equal partnership with them as exemplified here:
They made you feel at ease, nothing was too
much trouble for them to explain. They were
just like me, anyone on the street really. It

81

was nothing like I expected it to be with his

long ponytail (visiting consultant). He
explained about the hip problems, he was
very pleased that wed managed to get clear
the glue ear through taking milk out of her
diet and giving lactase reduced milk which
she can tolerate and that weve kept chest
infections to a minimum
(mother of child diagnosed with Sanfillipo
Syndrome)

Findings
Parents stories have identified how the clinical
practices of paediatricians impacted upon them.
Sensitive paediatricians, who formed the majority,
were able to enter the life world of parents and
understand it from their perspective. Their clinical
practices reflected a humanistic approach to care
and met the double obligation principle of combining technical skills with an understanding of
their life world as parents. This was characterized
by technical expertise, good communication, interpersonal and time management skills as well as
human sympathy and understanding.
In contrast, insensitive practitioners, four in all,
did not meet the needs of parents. Their clinical
practices reflected a technocratic approach to care
and they were unable or unwilling to enter the life
world of parents or understand it from their perspective. This was characterized by poor communication, interpersonal and time management
skills as well as a lack of human understanding and
compassion. In three cases this approach lead to
the dismissal of parental concerns resulting in
delayed diagnosis with serious consequences for
the families. Parents, especially mothers, showed a
determination to arrive at a diagnosis that made
sense of their knowledge and understanding of
their own child. It was their persistency that led to
correct diagnosis. and transfer to sensitive paediatricians who met needs of their child, themselves
as parents and the family as a whole.

Discussion
Parents stories provide further evidence of the
impact of practices by paediatricians upon them

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R. Davies et al.

during what is a series of stressful and life changing

events as they become the parent of a child with a
life-limiting condition. Their stories illuminate
both sensitive and insensitive care and should
inform future clinical practice.

Acknowledgements
The authors would like to thank the parents who
took part in this study and the Wales Office of
Research and Development (Welsh Assembly for
Wales) who funded this.

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2003 Blackwell Publishing Ltd, Child: Care, Health & Development, 29, 1, 7782