APPENDIX 42
Further Memorandum by Centre for Family
Research (MS 51)
The findings presented here are drawn from the
two recent reports of a study that was funded by the NHS R&D
(Mother and Child Health Initiative): Detection of fetal abnormality
at different gestations: impact on parents and service implications.
The memorandum addresses two areas of concern
to the inquiry: (i) the staffing structure of maternity care teams
and (ii) the provision of training for health professionals who
advise pregnant women and new mothers.
1.1 THE STAFFING
STRUCTURE OF
MATERNITY CARE
TEAMS
We have identified anomalies in how results
of prenatal screening test results are communicated between members
of the team of health professionals caring for pregnant women.
1.1.1 Recommendations
The frequent absence of means of effective communication
between primary and secondary care about diagnosed abnormalities,
and health professionals' uncertainties about their role has implications
for the quality of care given to women who receive positive results
after prenatal screening or diagnosis.
1.1.1.1 There is a need for standards to
be established concerning the communication of information to
all of the team of health professionals responsible for the community-based
care of pregnant women after a positive test result.
1.1.1.2 Emphasis should be placed on understanding
the roles of and relationships between the very many different
individuals who constitute the maternity care team. It extends
beyond the midwife, obstetrician and GP and includes health visitors,
sonographers, and even laboratory staff.
1.1.2 Methodology
Postal questionnaires were sent to 714 community-based
health professionals (GPs, midwives and health visitors) in primary
care practices across London, East Anglia, the Southeast and Southwest
of England. 131 GPs, 143 midwives and 151 health visitors returned
questionnaires, an overall response rate of 60.4%.
The outcomes of interest were: descriptive measures
of how information about prenatal screening and diagnostic test
results is communicated to health professionals working in the
primary care team; and study participants' views about the timeliness
and sufficiency of the information they are given.
1.1.3 Findings: Information about Results
from Serum Screening for Down's Syndrome
Sixteen per cent of primary care professionals
reported that they were not usually informed of high-risk results
after serum screening for Down's syndrome. Twenty eight per cent
were either not usually told about the possibility of abnormalities
detected on ultrasound or only heard of such abnormalities from
the woman herself. Even when informed, 28% of midwives and GPs
did not know what action they were expected to take.
1.1.4 Findings: Information about Confirmed
Abnormalities
Information about confirmed abnormalities is
not always communicated to primary care. Only 29% were told soon
enough about diagnosed abnormalities and only 17% of health professionals
reported that the information they were given was always sufficient
to allow them to discuss issues with their patients.
1.1.5 Findings: What did Health Professionals
find Helpful
The timeliness and adequacy of information was
in part dependent on who conveyed the information. The presence
of specialist screening co-ordinators was perceived to be helpful
by 76% of health professionals.
Improvements in how they were told about abnormalities
were suggested: these focussed on the need for systems and protocols
that ensured that quality information was communicated quickly.
Responses to questions about the local organisation
of antenatal care and who should provide care identified the importance
of roles and relationships within the community and between primary
and secondary care. These comments highlighted some uncertainties
about the roles of different health professionals once a diagnosis
of abnormality is confirmed. Many professionals associated good
communication with specific personal circumstances, for example
having practice-attached midwives, or pre-existing relationships.
Inter-professional relationships were sometimes related to inter-personal
aspects and a number of study participants identified poor relationships
between different professional groups working in the community
as a cause for concern that had an impact on the efficient communication
of information.
1.2 THE PROVISION
OF TRAINING
FOR HEALTH
PROFESSIONALS WHO
ADVISE PREGNANT
WOMEN AND
NEW MOTHERS
Interviews with a range of professionals involved
with the care of pregnant women have revealed a number of issues
around their training needs, particularly around the time of prenatal
screening and diagnosis and when women have terminations after
prenatal diagnosis.
1.2.1 RecommendationsMany authors have
recently commented on how laboratories are required to adhere
to quality standards in the conduct of tests whereas there are
no such standards relating to the the provision of information
about such tests.
1.2.1.1 When screening tests are introduced,
including ultrasound scans, the resources to ensure potential
participants are fully informed about the nature, purpose and
implications of the test should be provided along with those to
provide the technical service.
1.2.1.2 Health professionals, including
ultrasonographers, need to be trained specifically about the tests
and about how to be able to provide this information to pregnant
women. They require training in communication skills and how to
give bad news.
1.2.1.3 It is unacceptable if staff feel
that they do not have the knowledge or skills to do difficult
work. This is particularly true for midwives and gynaecology nurses
involved with women undergoing a termination of pregnancy after
a prenatal diagnosis.
1.2.1.4 There is a need to explore further
with health professionals what they mean by support and how that
best can be provided. Feeling supported however, comes from having
the necessary knowledge skills and resources to do a job well.
1.2.1.5 The full range of health professionals
involved with the care of pregnant women and who require relevant
and necessary training should be clearly identified.
1.2.2 Methodology
Interviews and discussion groups were held with
a range of health professionals providing care for pregnant women
and new parents around prenatal screening, diagnosis, termination
of pregnancy after a prenatal diagnosis and at the birth of a
baby with previously undiagnosed abnormalities.
1.2.3 Findings: Concerns about Prenatal Screening
A major concern of health professionals was
whether or not women had been given sufficient information about
the tests that they were to undergo such that they understood
the implications and had made an "informed choice".
1.2.4 Findings: Concerns about Positive Prenatal
Screening Test Results
When an abnormal test result occurs, health
professionals describe a number of concerns. Not surprisingly,
many staff find it difficult to give bad news to parents and there
are particular situations which make it even harder including
organisational aspects of clinics. Further difficulties arise
when staff do not understand the tests, and the implications and
consequences of a positive result.
1.2.5 Findings: Concerns Expressed by Ultrasonographers
Radiographers undertake specialised training
to become ultrasonographers. Some of those in this study felt
that their own training had concentrated too much on technical
aspects of ultrasound and the management of ultrasound facilities.
There was too little that addressed what were perceived to be
important issues: interpersonal skills, how to break bad news,
counselling. Input on these aspects appears limited within the
course to a counselling workshop and the trainee is left to learn
these skills within training placements and from colleagues. This
will vary according to what is available in a particular hospital
and with the attitudes and abilities of other staff.
Ultrasonographers are face to face with a mother
when they discover an abnormality. There are structural constraints
on their ability to do the difficult job of telling the mother
or parents what they have found eg busy clinics, short appointment
times, no space. However, training in communication skills and
how to break bad news was particularly needed, as was support
around the impact on them of discovering the abnormality.
1.2.6 Findings: Supporting Women Having a
Termination of Pregnancy
For midwives and gynaecology nurses involved
with the care of women undergoing a termination of pregnancy after
a prenatal diagnosis, there are two, albeit related, needs. First
there is a need for training in how to do aspects of work around
prenatal diagnosis and secondly, a need for support while doing
that work. In general, staff felt that there was inadequate training
to prepare them for dealing with the diagnosis of an abnormality
and its aftermath. While the proportion of basic training allocated
to issues around bereavement and loss generally had increased
in recent times, that around the practical aspects of assisting
with termination had not.
Inexperienced midwives could be worried that
they wouldn't know what to say to distressed parents or be able
to deal with a grossly deformed fetus or the delivery of one who
continues to show signs of life after birth. As well as training
around managing the delivery, both practically and sensitively,
there are the issues of dealing with the body, post-mortems and
paperwork. Terminations are infrequent occurrences and there is
not the opportunity to become very well practised.
1.2.6.1 Findings: What did Health Professionals
find Helpful
Members of staff who had done some counselling
training felt better able to talk with parents and to listen to
them. They felt they were more able to be non-directive but training
in general and in counselling and communication specifically is
hard for many health professionals to come by.
The majority of informal training around caring
for women undergoing termination comes from other staff. This
can be and is supportive and valuable but is not sufficient and
adds burden to over-worked professional groups. Significant amounts
of formal training is available through the voluntary sector,
in particular through Antenatal Results and Choices, (ARC, www.arc-uk.org).
One particular difficulty with regards training was the limited
funds that were available. Difficult choices had to be made with
limited training budgets about which courses to attend and who
was to go. It was usually expected that only one midwife would
go on any particular course and that she would return and train
colleagues. The sort of sensitive and experiential material that
was included in courses dealing with termination and bereavement
needed, however, to be presented at first hand by individuals
trained in training.
RELEVANT PUBLICATIONS
Statham H, Solomou W, Green JM. When a baby
has an abnormality: a study of parents' experiences. Volume
1 of the report of a study funded by a grant from the NHS (R&D)
Mother and Child Health Initiative (MCH 4-12) "Detection
of fetal abnormality at different gestations: impact on parents
and service implication". Cambridge: Centre for Family Research,
University of Cambridge, 2001.
Statham H, Solomou W, Green JM. When a baby
has an abnormality: a study of health professionals' experiences.
Volume 2 of the report of a study funded by a grant from the
NHS (R&D) Mother and Child Health Initiative (MCH 4-12) "Detection
of fetal abnormality at different gestations: impact on parents
and service implications". Cambridge: Centre for Family Research,
University of Cambridge, 2002.
Statham H. (2002) Prenatal diagnosis of fetal
abnormality: the decision to terminate the pregnancy and the psychological
consequences. Fetal and Maternal Medicine Review 13: 213-247.
Statham H. The parents' reactions to termination
of pregnancy for fetal abnormality: from a mother's point of view
In press Prenatal Diagnosis: the human side (2nd Edition 2003)
Eds: Lenore Abramsky and Jean Chapple
Statham H, Solomou W, Green JM. Continuing
a pregnancy after the diagnosis of an anomaly: parents' experiences
In press Prenatal Diagnosis: the human side (2nd Edition 2003)
Eds: Lenore Abramsky and Jean Chapple
Statham H, Solomou W, Green JM. (2003) Communication
of prenatal screening and diagnosis results to community health
professionals In press Public Health.
February 2003
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