I S S U E S A N D IN N O V A T I O N S IN N U R S I N G P R A C T I C E
Decision-making about risk in people with epilepsy and intellectual
disability
Dineke Vallenga
MSc RN
Researcher, Kempenhaeghe, Heeze, The Netherlands
Mieke H.F. Grypdonck
PhD RN
Professor of Nursing Science, University of Utrecht, Utrecht, The Netherlands; and Ghent University, Ghent, Belgium
Francis I.Y. Tan
MD
Medical Doctor, Manager, Kempenhaeghe, Heeze, The Netherlands
Bert H.G.M. Lendemeijer
PhD RN
Researcher, GGNet, Warnsveld, The Netherlands
Paul A.J.M. Boon
PhD MD
Professor of Neurology, University Hospital of Ghent, Ghent, Belgium
Accepted for publication 27 October 2005
Correspondence:
Dineke Vallenga,
Kempenhaeghe,
Research and Development,
PO Box 61,
5590 AB Heeze,
The Netherlands.
E-mail: [email protected]
602
VALLENGA D., GRYPDONCK M.H.F., TAN F.I.Y., LENDEMEIJER B.H.G.M. &
B O O N P . A . J . M . ( 2 0 0 6 ) Journal of Advanced Nursing 54(5), 602–611
Decision-making about risk in people with epilepsy and intellectual disability
Aim. This paper reports a study of the process of risk-evaluation and subsequent
decision-making in the care for people with epilepsy and intellectual disability.
Background. People with intellectual disability and severe epilepsy are at risk of
suffering accidents during seizure, and often need protection. Whether to implement protective measures or to accept risk is a complex decision, burdened with
uncertainty. Taking risks can lead to dangerous, sometimes life-threatening situations, while protective measures are restrictive and may raise ethical concerns.
Methods. In 2003 a multiple embedded case study was conducted with 15 clients.
In each case, the client, their representative, care-manager and nurse were interviewed.
Findings. The decision about whether to accept risks or implement protective
measures was always taken in relation to specific events, and varied from
medication and supervision to total restriction of the client’s mobility. Decisionmaking was influenced by frequency, type, predictability and consequences of
seizures; the effectiveness and practicability of protective measures; additional
disabilities; characteristics of the client and their representative; and characteristics of nurses and organization. The predominant factor was the attitude of
the representatives. They determined the relative weight of the other factors
involved.
Conclusion. A systematic approach to risk management could considerably
improve the balance between risk and quality of life. Continuous evaluation
would make it possible to tune the application of protective measures to the
severity of the seizures at any time, and to avoid protective measures being
maintained only because care providers have become accustomed to them. A
2006 The Authors. Journal compilation 2006 Blackwell Publishing Ltd
Issues and innovations in nursing practice
Decision-making about risk
systematic assessment of clients’ capabilities to participate in this complex
decision-making process is equally indicated.
Keywords: decision-making, epilepsy, intellectual disablility, qualitative study, risk.
Background
Approximately 30% of people with intellectual disability also
suffer from epilepsy. This percentage increases with the
severity of the disability and as more complications are
involved (Coulter 1997). While the literature gives data about
incidence, prevalence, type and severity of injuries and death
associated with epilepsy (Buck et al. 1997, Spitz 1998,
Neufeld et al. 1999, Ficker 2000), few specific data are
available for people with combined epilepsy and intellectual
disability (Forsgren et al. 1996, Coulter 1997, Kirch &
Weller 2001). However, these show that although people
with epilepsy run a greater risk of accident and mortality than
people without epilepsy, this is mainly due to the relatively
small group with severe, refractory epilepsy. It is this group
that is at greater risk than others of suffering accidents as a
consequence of seizures, death due to the underlying causes
of the epilepsy, or sudden unexplained death in epilepsy
(Coulter 1997, Commission on Epilepsy, Risk and Insurance
2000). In the case of people with both intellectual disability
and epilepsy, the underlying condition provoking intellectual
disability may also lead to this severe, refractory epilepsy
(Vallenga et al. 2004). A literature search yielded no studies
specifically about the management of the risk of injury in
people with combined epilepsy and intellectual disability.
Care for people with epilepsy and intellectual disability
People with intellectual disability have limitations in intellectual functioning and adaptive behaviour, expressed in
conceptual, social and practical adaptive skills (American
Association on Mental Retardation 2002). These limitations
make them vulnerable in personal decision-making situations. They are, however, increasingly asked to make
decisions independently; including consenting to invasive
medical procedures and accepting associated risks (Hickson
& Khemka 1999, Biesaart & Hubben 2000). There are no
clinical standards for the determination of consent capacity,
and few instruments to assess their decision-making capacity
(Dinerstein 1999, Biesaart & Hubben 2000). Relieving the
symptoms of the epilepsy and safeguarding other aspects of
clients’ quality of life, including normalization of lifestyle,
optimization of individual prospects, independence and
respect for autonomy, are formidable challenges. Those
who have responsibility for determining circumstances in
which independence is or is not in a client’s best interests are
faced with ethical challenges made more complex by
enhanced opportunities for intellectually disabled to make
their own decisions (Dinerstein 1999). Accepting risk or
taking protective measures is a complex decision, burdened
with uncertainty. Taking risks can lead to dangerous,
sometimes life-threatening situations, while protective measures are often restrictive, may raise ethical concerns and
diminish quality of life. Little is known about how decisions
in which risks have to be weighed against quality of life are
made in caring for people with epilepsy and intellectual
disability.
The study
Aim
The aim of the study was to investigate the process of riskevaluation and subsequent decision-making about the application of protective measures in residential care for people
with epilepsy as well as intellectual disability (hereafter the
‘decision-making process’).
Method
A qualitative research design, the multiple embedded case
study, was chosen to examine the issue in depth and in
context. In a case study, the object of study is studied
simultaneously in its different aspects. In embedded case
studies, the case will incorporate several sub-units of analysis
(Yin 1994, Scholz & Tietje 2001). We used an embedded case
study because four units of analysis were involved in each
case. In order to compare the cases, a multiple case study, in
which the interview topic and interview conditions remain
the same for all cases, was most suitable. The multiple
embedded case study allowed us to describe the decisionmaking process as it unfolds during moments of real and
experienced risk in the daily care-giving practice.
Sample
We studied the cases of 15 clients in a specialized residential
epilepsy centre in 2003. Their ages ranged from 7 to 64 years
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D. Vallenga et al.
Table 1 Sex and age clients, additional disabilities and the actuation
for taking measures
Table 2 Occurrence per seizure type, most common seizure time and
seizure frequency
Client characteristics
Seizure characteristics
Sex
Male
Female
Age (years)
5–10
15–20
21–30
31–40
41–50
51–60
60–65
Additional disabilities
Light intellectual disability
Moderate intellectual disability
Profound intellectual disability
Physical disability
Visual disability
Behavioural problems
Osteoporosis
Activation for protective measures
Seizures
Additional disabilities
Combination of seizures and additional disabilities
n*
8
7
1
3
2
1
4
2
2
4
8
3
9
1
2
3
8
1
6
*Number of clients.
(Table 1). Cases were included when a specific risk decision
was involved that the care-manager wanted to have discussed. Each of the 15 case studies consisted of four
interviews: one with the client’s representative, in this study
a parent, brother or sister; one with the care-manager, who
was the physician or psychologist responsible for management of the client’s care; one with the nurse, who provided
the care and one with the client when this was possible. One
adult client was denied permission to participate by his
representative and we accepted this. The data from the
interview with this representative did not suggest that a client
interview would have yielded new information for the study.
Data collection
Data were gathered by means of focused interviews (Yin
1994). The first author interviewed all participants. A full
interview was conducted with seven of the 14 clients. For
three of these, an interview with the same topic-list as the
others was too demanding. In these cases we discussed
decision-making in choices with which they had direct
experience. The other seven clients were all seen but, due to
the severity of their intellectual disability, it was not possible
to conduct a full interview. However, these visits gave the
604
Seizure type
Seizure-free with medication
Partial complex
Generalized tonic-clonic
Serial seizure/status epilepticus
Not labelled
Time when seizure commonly occurs
Unknown
Day
Night
Seizure-free
Seizure frequency
Variable
>10 per day
Daily
>20 per week
10–20 per week
1–9 per week
1–5 per month
n*
1
10
12
4
1
1
9
4
1
1
1
1
1
3
6
2
*Number of clients. Clients could suffer more than one type of
seizure.
researcher first-hand information about the client, allowing
assessment of their level of communication and interaction
with nurses. Of the interviews with the representatives, 10
were conducted in the home of the interviewee, three in the
researcher’s office and two by telephone. Data about client
age, disabilities and the activation for protective measures
(Table 1), type and frequency of seizures (Table 2) and
protective measures taken (Table 3) were obtained by means
of a questionnaire answered by the care-manager.
Ethical considerations
The Medical Ethical Committee of the epilepsy centre
approved the study. Prior to participation, the goals of the
interview and study were explained to all involved, people
were asked to participate and anonymity was guaranteed.
Dutch health legislation makes specific provisions for
patients not (fully) capable of acting competently in their
own interests. The 1995 Medical Treatment Agreement Act
requires that a court-appointed representative, acting in
conjunction with the client wherever possible, makes
decisions about medical treatment, care, nursing and
support. We asked these representatives for permission to
interview their relative; in all cases but one, the representatives agreed. Before interviewing the remaining 14 clients,
the purpose of the interview was explained again and they
were asked to participate. The language used was adapted
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Decision-making about risk
Table 3 Protective measures
Protective measure (individual)
Quantity*
100% No Walking whatsoever
1 on 1 support in walking
Rollator
Audio monitoring at night
Video monitoring at night
Protective headgear
Waist belt in bed
Mattresses along the walls beside the bed
Bedside rails
Pillow on table (to protect the chin and face)
Wheelchair
Waist belt/wheelchair with a table
(Electric) wheelchair for outside use
Elbow/knee protectors
Tricycle with safety belt
Tricycle
Trousers fixed to wheelchair to prevent standing up
Vest fixed on the bed to prevent standing up
Walkabout detection
Closed doors
Polypharmacy
4
5
3
3
1
11
3
1
5
1
12
8
1
2
1
3
2
1
1
1
15
*Number of clients.
to the client’s communicative skills. All clients who were
able to communicate agreed. The interviews were recorded
on mini-disk.
Data analysis
The study was conducted in a cyclical manner in which
phases of data gathering, data analysis, and reflections on
intermediate results were rotated (Wester 1991). The 16
interviews resulting from the first four case studies were
transcribed verbatim, entered into the computer program
MAXqda (Kuckartz 2001), thematically ordered and analysed using constant comparative analysis. Subsequently,
problems and processes were described and the case studies
were compared. Of the 59 interviews, 41 were recorded,
producing 20 hours and 15 minutes of material. For practical
reasons not all of this was fully transcribed. The data from
the remaining case studies were analysed by repeated
listening. While listening, notes were taken and fragments
transcribed which were compared with previously analysed
material.
Reliability and validity
To increase the reliability of the study, all interview
transcriptions were returned to the respective care-managers,
nurses and client representatives for their approval. Tran-
scriptions were not returned to clients for approval because
this exceeded their capacities. The first eight interviews,
analyses and case study reports were co-read by two other
researchers.
For reasons of validation after the concept research report
had been written, 90 minutes of recording, in random
segments of 10 minutes, were listened to again and compared
with the results of the analysis. This comparison showed that
the data and analysis corresponded with each other; no
changes were deemed necessary.
Findings
Decision-making process
Situations in which real risk was being experienced and
decisions about protective measures were being made could
be grouped into three categories. In three cases, accidents
were so severe that immediate intervention was necessary to
prevent recurrence and enable healing. For these clients, the
partial immobilization temporarily required for healing
functioned as a protective measure. The question of further
protective measures reasserted itself after recovery from
these injuries. In six cases, a series of less severe incidents
occurred and the decision to intervene was made on the basis
of their cumulative effect. The fear that the accidents would
at some point become more serious or lead to permanent
injury was the underlying motivation for the introduction of
protective measures. In five cases, circumstantial factors
triggered the consideration and/or implementation of protective measures. Among these circumstances were insufficient availability of staff to keep watch or provide assistance
after a fall; accidents with other clients decreasing the
willingness of staff to take risks and fear on the part of
parents.
Protective measures were often taken in situations of
immediate threat, allowing no time to consider their negative
effects, and consideration of these effects would come later.
A protective measure was only evaluated as to its protective
effect after new incidents had occurred. As soon as a measure
failed to provide adequate protection, another was chosen. In
one case, measure was piled on to measure: a client capable
of walking was nevertheless given a wheelchair to prevent
falls. Subsequently, she was restrained in the wheelchair and
also the toilet-chair to prevent her standing up without staff
assistance. Bedside rails were added to prevent her getting out
of bed unaided. After falling over a bedrail she was tied in
with a waist belt, first only when she was restless, but later
permanently because she would regularly climb over the
bedside rails.
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Protective measures
Seizures
Frequency
Effectiveness
Practicability
Characteristics of clients
and representatives
Type
Predictability
Client’s age
Consequences
The decisionmaking process
Additional disabilities
Client’s decision-making
capacity
Representative’s
relationship with client
Representative’s fear
Physical
Visual
Characteristics of
nurses and organisation
Behaviour
Communication skills
Representative’s attitude
to responsibility
Attitudes to care-giving
Figure 1 Factors influencing the decisionmaking process.
Resources
It is important to note that in none of the cases did the
decision-making process include set times or criteria for
evaluation. In 12 cases, the use of protective measures was
evaluated as part of the biennial care plan meeting. In three
case studies, there was continual evaluation of the epilepsy
and the consequences of protective measures ‘following the
waves of the epilepsy’, to quote the care-manager, meaning
that the use of protective measures was continually tuned to
the severity of the epilepsy.
Factors influencing decision-making process
Analysis showed that influencing factors could be grouped
into the following categories: seizures; protective measures;
disabilities of the client besides epilepsy; characteristics of the
client; characteristics of his representative; and factors
involving nurses and the institution (Figure 1). Ethical
considerations were mostly implicit and rarely concrete.
Influence of seizures
Besides seizure type and frequency, the unpredictability of
seizures and severity of injuries influenced the decisionmaking process (Table 2). Continuous anxiety about the
possibility of seizure and injury caused constant vigilance in
parents and nurses. Their coping with this anxiety had considerable influence on the lives of clients and their social
environment. If the anxiety was considerable, the balance
between protection and risk swung in favour of protection.
For example, parents would stay at home if they expected a
seizure, and higher risk activities such as cycling or swimming
were avoided altogether. Systematic recording and analysis of
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accidents was lacking in all of the cases, making it hard for
those involved to examine to what extent their fear was
proportionate to the risk.
In the interviews we asked how often clients were actually
injured during seizures, and parents answered this question
more precisely than other interviewees. Nurses and caremanagers did not know exactly how often a client had been
injured. This may have been because care-managers are not
involved in direct care and nurses working differing shifts
may sometimes be absent for long periods. Clients tended to
emphasize the most serious accident they had experienced,
giving a biased account.
Influence of protective measures
The consequences of protective measures for the client’s life,
and their effectiveness and feasibility influenced the decisionmaking process. As mentioned earlier, protective measures
were implemented because clients fell often and unexpectedly, or because of injury suffered as a result of these falls.
Protective measures were taken on an individual basis and
included (poly)pharmacy, supervision, avoidance of higher
risk activities, provision of protective clothing, or physical
restraint of movement (Table 3). Besides this, general measures were taken in the furnishing of rooms. Heating elements
were shielded, thermostatic controls installed and kitchens
had induction cooking equipment which, having no open
flame or hot surfaces, was safer. Furniture had rounded edges
and carpeting was chosen to avoid rough surfaces.
Protective measures can have a profound influence on the
life of the client. Supervision was considered by nurses to be a
major intrusion on client’s privacy, especially when it was
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extended overnight. However, no clients mentioned this
restriction. They seemed to take surveillance and control for
granted. One client felt that it was very restrictive not to be
allowed to go shopping alone, and one care-manager indicated that the client was being curtailed in his personal
development by the restricted mobility. Protective headgear
was seen as stigmatizing and ugly. It caused sweating and
itchiness, and headgear with chin protection limited facial
expression and jaw movement. Interventions restricting
freedom of movement were seen as most intrusive by all
involved. The use of medication was not seen as intrusive,
even though pharmacy can have a marked influence on
clients’ awareness.
The attitude of clients had implications for the practicability of protective measures. They could react to interventions with resistance, resignation or sadness. Resistance could
take the form of ignoring measures (e.g. not wearing
headgear), verbal or physical protest, or making measures
impracticable (one client discarded his headgear in the waste
container). Continuing resistance made application of protective measures difficult. In some instances, this eventually
led to the measure being discontinued. Some clients viewed
resistance as disobedience. In one case the client reacted with
resignation and sadness to his restricted freedom of movement.
Influence of additional disabilities
The clients in this study often had multiple disabilities besides
refractory epilepsy. Protection from consequences of seizure
was in eight cases the reason for consideration and/or
implementation of new measures. In six cases, the client was
also protected from the consequences of falling because of
physical disabilities, visual impairments, osteoporosis or
behavioural problems. In one case, the client’s epilepsy was
controlled by medication but the protective measures were
continued because of osteoporosis and other physical disabilities.
Influence of characteristics of the client and their
representative
The client’s age and capacity to make decisions influenced the
decision-making process. Age was an important factor because the capacity to make independent decisions was related
to it, and also because the age of the client and the role of the
representative were interrelated. The representatives were
parents or a brother or sister of the client. In most instances,
brothers or sisters had less close contact with the client than
parents. The younger the clients, the more responsibility their
parents took. However, all parents mentioned having been
through a process of ‘letting go’.
Decision-making about risk
The parents of clients younger than 20 years participated
intensively in the care process. They decided about acceptable
risks, were immediately informed when accidents occurred
and generally directed the process. Analysis showed that
the desire to be present when their child had difficulties and
to be directly involved in decision-making were their main
motives. Parents wanted to make the decisions themselves
for two reasons. First, they wished to be involved in the
choice of treatment and, secondly, they felt that the responsibility for the safety of their child was theirs. They felt that
they could not expect the nurses to carry such a heavy
responsibility.
In decisions about adult clients (21–30 years), parents still
played an important role. These parents said that it was their
responsibility to make the final decision about acceptable
risk. Compared to parents of younger clients, they were less
involved in daily care-giving and therefore more dependent
on information supplied by nurses and care-manager.
The family members of middle-aged clients (31–50 years)
had witnessed many developments and changes in care-giving
practice. These older parents remembered with sorrow and
sometimes revulsion the past years in which they could only
witness what was happening to their child. They did not
want their son or daughter to go through similar negative
experiences again. This led to a critical attitude to protective
measures and greater willingness to accept the risk of
accident.
Clients now aged 51 years or more were admitted to the
epilepsy centre in the years when care-giving was characterized by a ‘medical’ approach, medical treatment was the core
concern, and benign paternalism on the part of the doctor the
main mode of operation. These clients had a brother or sister
as their representative who might have retained the attitudes
associated with this approach. They assumed that the
neurologist was responsible for care and the implementation
of protective measures, and did not want to be involved in
decision-making. Two of them thought that their contact
with their brother or sister was not close enough to enable
them to make decisions about them.
In recent years, optimization of participation in society and
client self-determination have become basic tenets in caring
for people with intellectual disability. For this reason,
interviewees were asked to give their opinion of the client’s
capacity to make such decisions. In all cases care-managers,
nurses and representatives agreed that the client was capable
of expressing a preference. They disagreed, however, on the
client’s capacity for decision-making. In interviews, some
clients proved to have a partial overview of their situation,
and were able to discuss risks to which they were exposed.
However, it was in these specific cases that care-managers,
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D. Vallenga et al.
nurses and representatives showed low consensus on the
client’s capacity for independent decision-making. In none of
the cases had an objective description of the client’s decisionmaking capacity been made, although institutional policy
advocated a biennial determination of their decision-making
capacity. In one instance, all involved agreed that the client
had an overview of his situation and could make his own
decisions. The nurse, however, was reluctant to give the client
adequate information about the severity of the situation
because of the distress that this might cause.
A number of clients realized that others made the decisions
about the use of protective measures. When asked why these
measures were used, clients usually answered, ‘Because the
neurologist said so’. Some mentioned their representative.
Clients were not accustomed to talking about their own
situation. Their involvement in important decisions was
limited to the nurse presenting to them the decision made by
the care-manager, nurse and representative, and the client
being given the opportunity to react to it. If clients disagreed
with these measures, attempts were made to persuade them to
accept them. In one case, the client was threatened with
sanctions for this purpose. Discussions in which clients was
fully and objectively informed were not conducted, and they
had insufficient information to be able to participate fully in
the discussion, or to make an independent decision. The
position of the clients was vulnerable.
Influence of characteristics of nurses and organization
Communicative skills of staff members, their attitudes towards care-giving, and the resources available for ensuring
safety all influenced the decision-making process. Analysis
showed that trust in staff members was essential for clients
and representatives. Three factors influenced this trust:
open communication, empathy and continuity. Open communication existed when staff members were prepared
and had the opportunity to develop a relationship with
families and clients, and when they had the capacity to
communicate openly about incidents and risks. When open
communication was lacking, this led to misunderstandings
and distrust.
Empathy involved understanding what clients and family
went through, both as a result of accidents and injuries and
when dealing with lengthy hospitalization and changes in
care-giving. Frequent changes of care-manager or nurse were
detrimental to the development of confidence in relationships.
The policy of the epilepsy centre was that decisions should
be made by consensus, and care-managers considered it their
role to strive for this consensus. Representatives indicated
that their views were heard, and some experienced an
608
increasing degree of empowerment and shared responsibility.
Others did not really believe that their views were heard or
even wanted. One client stated unequivocally that, in his
view, his opinion did not count.
We experienced an improvement in the decision-making
process in the studied cases during the study. Interviewees
became aware of the situation and their role in risk
evaluation and decision-making. This resulted in improved
communication between all involved, and increased understanding of the personal responsibilities and more insight in
the possibilities of clients in making these decisions.
Care was given within parameters set by the organization,
and preferences of representatives, clients and nurses could
not always be realized because of choices made by the
organization and available resources. One example was the
reduction of residential group size from 12 to six people, a
change that all interviewees saw as positive. This change,
however, also influenced decisions about risk-taking. Previously two nurses were available continuously, but now there
was only one and it was no longer possible to perform tasks
requiring two people, such as lifting a client who had fallen or
maintaining constant supervision of all clients. When sufficient supervision could not be provided, the door was now
locked and clients were occasionally tied to their chairs with
a waist safety-belt to prevent falls.
Discussion
In the literature about risks associated with epilepsy, data
about the incidence of nonfatal seizure-related injuries and
the circumstances in which they occur are lacking (Buck et al.
1997, Coulter 1997). Only risk factors for submersion injury
or drowning are described (Diekema et al. 1993, Kemp &
Silbert 1993). As did Ficker (2000), and we found that minor
injuries often go unreported. In our study sample, staff had
no data about the occurrence of accidents, whether in general
or client-specific terms, to support their decision-making.
Decisions to use or to alter protective measures were taken
in reaction to specific events in which it was almost inevitable
that considerations of protection took precedence over those
of quality of life. Protective measures were seen as an
inevitable and/or lifesaving part of daily care routines and
included (poly)pharmacy, supervision, avoidance of higherrisk activities, provision of protective clothing and physical
restraints of movement. There was minimal attention for
evaluation of their effectiveness, although observation,
evaluation and re-evaluation are considered part of successful
injury prevention (Forjuoh et al. 2001). The primary reason
for evaluation of measures already implemented was protection from the consequences of epilepsy rather than the
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negative effects resulting from their continued use, such as
limited privacy or loss of freedom of voluntary movement.
This was possibly due to the severity of injuries suffered when
protection was reduced, as in the case of a client who was
capable of walking but was permanently confined to a
wheelchair for protection. All involved felt that this exceeded
the limits of ethical acceptability, and he was allowed to walk
again under certain circumstances. However, when he fell
during seizure three weeks later, his headgear alone was
insufficient protection and he went into coma.
In the care for people with intellectual disabilities,
physical restraints are often used and discussed in relation
to behavioural problems, including self-injury (Allen et al.
1997, Cunningham et al. 2003, Sturmey et al. 2005).
Restraint applied as a safety measure is not discussed in the
sparse literature on injury-prevention studies of people with
intellectual disability (Forjuoh et al. 2001, Sherrard et al.
2004, Konarski & Tassé 2005). Coulter (1997), the author
of the only article on the subject that we could find,
discourages the use of wheelchairs and measures such as
protective headgear to prevent seizure related injuries
because many anecdotal reports have shown that injuries
often continue to occur even when restraints or other
protective measures are used.
There is more evidence related to the use of restraint as a
safety measure in the care of older people (Hamers &
Huizing 2005), often in nursing home residents who have
cognitive impairments (Hamers et al. 2003). There is also
growing evidence that reducing the number of physical
restraints does not lead to an increased number of falls or
related injuries (Evans et al. 2002). However, generalization
of these findings to the application of physical restraint in the
care for people with intellectual disability and epilepsy is not
possible. The injury risk for people with severe epilepsy and
intellectual disability differs from that for older people, even
if they are impaired cognitively. A seizure can occur suddenly
and unexpectedly, and be linked with impaired consciousness, contractions, typical convulsive movement or sudden
loss of muscle tone, sometimes with mouth or tongue biting,
and often resulting in injury of head, face, mouth, or limbs
(Brodie & Schachter 2001).
The use of alternatives, such as a safer environment and
individualized care, are discussed as approaches that minimize risk (Forjuoh et al. 2001, Hamers et al. 2003), but
individualized care and a safe environment require sufficient
staff. We found restraints in use as result of staff shortages, a
situation also reported in a recent Dutch study (Reinders
et al. 2005).
The policy of our study organization is that decisions
should be made by consensus, and clarity in roles and
Decision-making about risk
responsibilities and open communication are a prerequisite
for this (Fisher & Fisher 1999). Our findings show that the
attitudes of the representatives were a predominant factor
influencing decision-making and determined the relative
weight of the other factors involved.
Participation of clients in decision-making process was
low. This is in contradiction of developments in the care for
intellectually disabled people in which client self-determination has become a basic tenet and clients are encouraged to
make decisions independently, or at least to participate in
decisions that affect their lives (van Gennep & Steman 1997,
Hickson & Khemka 1999, Jenkinson 1999, Biesaart &
Hubben 2000). Hickson and Khemka (1999) found intellectually disabled people to be vulnerable in interpersonal
decision-making due to factors such as generally impaired
cognitive functioning and their not always being capable of
applying a step-wise decision-making process. There is some
evidence that many adults with mild intellectual disability
and some with moderate intellectual disability do have the
ability to give adequate consent to standard low-risk health
related treatments (Cea & Fisher 2003). Disclosing relevant
information and information tailored to clients’ cognitive
level is therefore important (Dinerstein 1999).
We found clients to be vulnerable in their dependency on
nurses and representatives, who decided whether or not they
were informed about their situation and involved in the
decision-making process. Jenkinson (1999) advised avoiding
an overload of information to facilitate decision-making. We
saw the opposite situation: clients being given too little or
inadequate information. This may be due to carers and client
representatives differing in their judgement of client competence. Biesaart and Hubben’s (1999, 2000) study showed that,
in the care for people with intellectual disability, there is only
little agreement on a definition of consent capacity and no
clear standard for determination of consent or decisionmaking capacity.
We discussed a number of ethically-sensitive aspects,
including the restrictive nature of protective measures,
limited information given to clients expected to participate
in decision-making, and intrusive decisions made by proxy.
The law in many countries, including the Netherlands,
controls the use of restrictive measures in order to protect
the rights of residential care clients. Nevertheless, safeguarding the position of clients is hampered by the lack of objective
standards for evaluating their decision-making capacity
(Biesaart & Hubben 2000), low transparency in the roles of
all involved in the decision-making process, and the desire of
the organization for consensus taking precedence over clients’
wishes. Applying protective measures is seen as part of the
daily care routine and the impact of the restrictiveness of the
2006 The Authors. Journal compilation 2006 Blackwell Publishing Ltd
609
D. Vallenga et al.
Acknowledgements
What is already known about this topic
• Approximately 30% of people with intellectual disability also suffer from epilepsy.
• People with severe, refractory epilepsy are at greater risk
than others of suffering accidents as a consequence of
seizures, death due to the underlying causes of the epilepsy, or sudden unexplained death in epilepsy.
• Protective measures are often taken to reduce risk for
these clients.
What this paper adds
• The lack of a systematic approach and of frequent
evaluation favours considerations of avoidance of risk
over those of quality of life.
• The attitude of client representatives determines the
relative weight of the other factors influencing the
decision-making process, and client participation in
the decision-making process is low.
• Decisions about whether to accept risks or implement
protective measures should always be taken in relation
to specific events.
measures sometimes disappears from view (Frederiks et al.
2005).
Conclusion
The experience and considerations of the staff of the
epilepsy centre may differ from those in other institutions,
and generalization of findings is therefore not possible
(Polit & Hungler 1991). However, our findings are
informative about the processes involved in such decisionmaking and the necessary preconditions for good practice,
and suggest ways to improve decision-making in this
institution and in others. Given the data, practice could
be improved by a methodical approach to risk management, including observation and recording of specific
individual risks, accidents and the circumstances in which
they occur, including pre-existing protective measures, and
the need for standards to evaluate clients’ decision-making
capacity. Continual evaluation would also make it possible
to follow the ‘waves of the epilepsy’ and tune the
application of protective measures to the severity of
seizures at any particular time. The findings also indicate
a number of issues for further research, particularly with
regard to the support of clients in participating in the
complex decision-making process.
610
The authors would like to thank the clients and their
representatives and the staff at Kempenhaeghe for their
participation in this study.
Author contributions
DV, BHGML and MHFG were responsible for the study
conception and design and drafting of the manuscript. DV
and MHFG performed the data collection and data analysis.
FIYT and PAJMB obtained funding and provided administrative support. MHFG made critical revisions to the paper.
BHGML, FIYT and PAJMB supervised the study.
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