Technology dependent children and family life

Technology dependent children and family life
Technology-dependent
children and family life
Janet Heaton, Jane Noyes, Patricia Sloper & Robina Shah
R
E
S
E
A
R
C
H
I
n the UK, advances in medical technologies have enabled
more children with complex health care needs to survive and
increasingly to be cared for at home with their families. This study
focussed on the experiences of 36 families of technology-dependent
children who used one or more medical devices (such as feeding
pumps and dialysis machines) on a daily basis. We examined what
the care routines relating to the devices involved (technical care)
and how they impacted on the children, their parents and siblings.
The key findings were:
w
o
r
k
s
RESEARCH FINDINGS FROM THE
SOCIAL POLICY RESEARCH UNIT
S P R U
AUGUST 2003
no.2003–02
Routines relating to the devices varied from family to family
depending on what types of devices were used, the children’s
age and medical diagnoses, and fluctuations in their health
status.
Family routines were variously structured around the
children’s use of the devices, monitoring of the children’s
condition, the time taken for the devices to perform their
function, and school or work schedules.
Technical care was mainly provided by the children’s parents,
particularly mothers, with varying levels of involvement from
other family members and service providers.
Some children relied on technical care from trained staff to
enable them to attend nursery or school.
One-third of the families had help from services in the home
and a third received respite care away from the home where
the child or the whole family were looked after; however, over
half the sample received neither of these services.
In general, the children’s use of medical devices was
recognised to have benefited their health and quality of life,
and made lives easier for their parents because the children’s
medical condition was generally more stable. However,
families highlighted problems with: availability of appropriate
respite care both away from the home and inside the home;
difficulties combining caring and working; sleep disruption;
social isolation; and children’s and siblings’ relatively limited
or disrupted participation at school and in social activities.
2
Background
‘Technology-dependent’ children
Table 1:
Medical devices used by the
children in the sample
Table 2:
Number of devices used per child
is the term used to describe those
children and young people who
Device
use one or more medical devices
to compensate for the partial failure
Used by
N children
Feeding pump/bolus
Suction machine
9
Nebuliser
8
Dialysis machine
8
Ventilator
6
Tracheostomy
5
Intravenous (IV) therapies
4
Volumatic spacer
4
Oxygen machine
4
skilled carer to look after them. Such
devices include dialysis machines,
ventilators and feeding pumps.
In 2001, it was estimated
that there could be up to 6000
Number of
children
1
11
2
9
3
5
4
6
5+
5
21
or loss of a vital body function,
and who also require a technically
Number of
devices
technology-dependent children
living in the community in the UK.
The present study adds to previous
research on this group by examining
what the care routines involve and
how the parents, children and
siblings were affected by them.
size and tolerance to the rates at
which fluids and foods could be
pumped through the body). At the
same time, these processes were
to varying degrees adapted to fit
Findings
Care routines
Others
(including naso-gastric tube,
humidification unit, inhaler,
colostomy; cough machine;
portacath)
13
around the social schedules of the
family, including school and work,
and also the schedules of services
families received. Hence children
were unplugged from feeding
A range of devices was used by the
pumps in time to get up for school
38 technology-dependent children
and this schedule could be adjusted
in the sample (see Table 1). Over
at weekends and non-school days.
two-thirds used more than one
and monitoring of the children’s
Some children were also given
device (see Table 2). A few children
condition. For example, the eight
medical permission to suspend
used their devices 24 hours a day,
children on dialysis all received
being tube-fed while they were
while most used them at regular
peritoneal dialysis at home for 9–10
away on holiday.
intervals during the day and night,
hours a night for 6–7 nights a week.
and as and when required. Patterns
By contrast, the 22 children who
of usage changed over time as
received artificial nutrition were fed
Technical care
the children became more or less
at intervals of up to two hours every
Technical care was mainly
dependent on the devices, and as
day and/or continuously overnight.
provided by the children’s parents,
The provision of technical care
particularly mothers, with varying
they physically grew. Use of devices
tended to increase when the children
involved following medical
levels of involvement from other
were ill.
protocols and operating
family members, including siblings,
Family routines were variously
programmes for devices that were
and service providers. Parents and
structured around the children’s use
set up according to the children’s
siblings provided other types of
of the devices, the time taken for the
medical diagnoses, needs and
personal and practical care for the
devices to perform their function,
characteristics (including their body
children; siblings also helped those
R
E
S
E
A
R
C
H
3
Effects on families
doing household chores. Some
Respite care
away from the home
of the young people interviewed
Twenty families received no respite
devices was recognised to have
took responsibility for their
care away from the home. A third
benefited the children’s health and
medical device.
received respite care where either
quality of life, and made lives easier
the child or the whole family were
for their parents. However, families
in the home and in other places
looked after. These breaks ranged
highlighted problems, detailed in
where the children spent time,
from a minimum of one weekend
Box 1, which affected the children’s
such as when visiting friends and
a year through to a maximum of
and families’ well-being.
relatives, and when on day trips and
two weeks a year plus one weekend
holidays. They also often continued
a month. The family model of
to provide technical care while
respite care provided by a children’s
their children were in hospital.
hospice for eight families in the
performing technical care by
Parents provided technical care
The children’s use of medical
Implications
sample was very highly valued.
Family placement schemes, where
As one of the parents who took part
Technical care at school
just the child stayed, were used by
in the study said, her child’s use of a
Thirty children attended a special or
three families and were also valued
medical device had made their lives
mainstream school or nursery, three
by them; however, this model of
‘easier’, but it was not an ‘easy’ life
were home educated and five did
respite was not for all families in
for them. The priority for health
not go to school or nursery. Twelve
the sample, some of whom did
and social care policymakers and
children relied on technical support
not want to be parted from their
providers is to ease the time-
from trained carers while they were
children.
demands of caring for a technology-
there. This support enabled them to
dependent child by providing
attend, but they sometimes missed
more technically-trained carers
school when their carers were not
and suitable respite care for families.
available, adding to the time they
missed through being off ill or
attending medical appointments.
Box 1:
Problems experienced
by children and families
Better co-ordinated and more
flexible organisational timetables
would also help to promote parents’,
children’s and siblings’ social
■
Respite care in the home
One-third of families had help from
services in the home. Seven families
Lack of availability of appropriate
respite care both away from
the home and inside the home,
especially in the evening and
overnight.
inclusion in work, school and
other social activities.
The key recommendations of the
study are that:
received help during the day from
services. This ranged from between
■
one hour a week to eight hours a
Difficulties combining caring and
working.
day. The evenings were the most
difficult time to obtain this help
and it did not always include
Sleep disruption.
■
Social isolation, particularly for
single parents and mothers from
minority ethnic groups.
Four families had a trained carer
during the night (for two nights a
week in two cases, and seven nights
a week in the others). However, this
service was not always dependable
or sufficient.
especially for single mothers and
mothers from minority ethnic
■
looking after siblings.
w
o
r
k
s
Support is needed for parents and
groups, who were found to be
particularly socially isolated and
coping with little, if any, support
from service providers or
extended family networks.
■
Children’s and siblings’ relatively
limited or disrupted participation
at school and in social activities.
More trained carers are needed to
provide technical care in schools,
at home and to accompany some
4
Methods
Further information
The project was carried out between
This publication should be cited as:
There is a serious shortage of
January 2001 and December 2002.
Heaton, J., Noyes, J., Sloper, P. and
suitable respite care for these
It was funded under the ESRC
Shah, R. (2003) ‘Technology-dependent
families both within and away
Innovative Health Technologies
children and family life’, Research Works,
from the home. Respite provision
research programme
2003–02, Social Policy Research Unit,
for the whole family away from
(http://www.york.ac.uk/res/iht).
University of York: York.
families when they go away on
holiday.
the home was very highly valued
by those children, siblings and
Families were recruited via
parents who received it. It is also
hospitals, a hospice, the Family
more likely to appeal to parents
Fund and a previous study.
who need respite but do not wish
A purposive sampling strategy
to be parted from their children.
was used in order to ensure single
There is a need to expand this
parents and ethnic minorities were
model of respite care to promote
included in the sample, and that
access for more families on a more
a number of children and siblings
frequent basis.
were among those interviewed.
Hospital appointments, work
The final sample of 36 families
schedules and school timetables
included 38 technology-dependent
could be arranged and co-
children who used one or more
ordinated to better reflect the
devices on a daily basis (or had
children’s care routines and
done so recently). A total of 75
minimise disruption to parents,
family members were interviewed,
children and siblings where
including 46 parents, 13 technology-
possible.
dependent children, 15 siblings
Copies of the research report:
Heaton, J., Noyes, J., Sloper, P. and
Shah, R. (2003) ‘Technology and Time:
home care regimes and technologydependent children’
are available from SPRU Publications
Office (price £3.00). Contact
Ruth Dowling on 01904 433608
or email [email protected]
We can send an email notification to
you when each new issue of Research
Works is posted on the website.
To register for this service please
email us at [email protected]
with the following information:
Name (Mr/Ms/Mrs/Dr etc.);
Job Title; Organisation; Address
(including Postcode); Tel/Fax/Email
and one grandparent.
Siblings were found to be both
involved in and affected by the
Data for the study were
care of technology-dependent
collected through face-to-face
children. Assessment of children
semi-structured interviews; a
and families’ needs should
structured questionnaire, covering
encompass the circumstances
socio-demographic characteristics
of and impact on siblings and
of the family, types of technologies
consider what support is needed
used and services used; time-line
for them.
drawings and self-completed diaries.
Additional contextual information
There may be scope for improving
was collected from nine interviews
the design of medical devices to
with 13 professionals involved in
minimise sleep disruption caused
the provision of services for this
by alarms triggered by machine
group.
faults, including tubes from
feeding and dialysis machines
becoming disconnected and
blocked when laid on.
he Social Policy Research Unit is an
independent research organisation
at the University of York. Established
in 1973, SPRU has an international
reputation for excellence in key areas
of social policy, including health and
community care, and social security.
Its Director is Professor Peter Kemp.
For further information about SPRU
contact the Director or the Information
Office, or visit our website at
http://www.york.ac.uk/inst/spru/
T
Social Policy Research Unit,
The University of York, Heslington,
York Y010 5DD, United Kingdom.
Telephone +44 (0)1904 433608
Fax +44 (0)1904 433618
Text +44 (0)1904 432626
E-mail [email protected]
Was this manual useful for you? yes no
Thank you for your participation!

* Your assessment is very important for improving the work of artificial intelligence, which forms the content of this project

Download PDF

advertisement