A major concern was that the hoarding Henry was carrying out showed strong traits, which were comparable with obsessive-compulsive disorder (O.C.D). O.C.D behaviours are often reported in adults with Down’s syndrome (Cohen, et al, 2002).
Davidson et al (2003:84) suggests that:
“Repetitive behaviours might be a part of the behavioural phenotype of individuals with Down’s syndrome. Behavioural rituals which commonly involved compulsive hoarding of objects or food can be motivated by stress or anxiety as seen in O.C.D. These rituals, especially compulsive hoarding, may be displayed for a specific function or purpose.”
“Obsessional-compulsive reactions are a mental health problem characterised by the persistent intrusion of unwanted thoughts and ideas into the person’s awareness,” (Ironbar, et al, 1997:323).
Obsessive-compulsive disorder is therefore explored using the belief that we all have such thoughts but can control them. In Henry these thoughts provoke anxiety, and the inability to dismiss the thought fuelling this anxiety. In order to reduce Henry’s anxiety he might partake in such behaviours (hoarding), temporarily reducing anxiety. Henry will go to great lengths to indulge in these behaviours, each time reducing anxiety and reinforcing the unreasonable belief that he may have.
Following the initial assessment of Henry this has given a good insight into his behaviours that affect him holistically. The behaviours, which will be concentrated on, will be his hoarding and self-exclusion as these behaviours seem to have an impact on Henry causing him to become aggressive.
McGill, (2001) found that challenging behaviours like Henry’s could be a response to his environment, such as under-or-over stimulation, noise levels, staff, awareness approach and training. Challenging behaviours most often serves four typical functions; gaining attention for the individual, enabling escape from demands, tangible reinforcement, and sensory stimulation, Northfield, (2003). So through an in-depth assessment we would be able to see why these behaviours were happening and more importantly how to help staff manage his behaviours.
So the community nurse chose to conduct a detailed functional assessment in order to assess the full extent of the behaviours. As with all assessments, information needs to be gathered over time and dealt with systematically in order to gain enough information that allowed us to design an intervention to facilitate Henry.
A functional assessment is a group of methodologies which involves identifying the functions served by a particular set of behaviours for a given individual in a given set of circumstances such as different environmental events or situations and, it is the process of seeking to understand the relationship between the various stimuli in the environment (Northfield, 2003 & Gates, 2003).
This was necessary to help understand the context and antecedents in which the behaviour was displayed (Donnellan, et al, 1988) and to consider the consequences which may be reinforcing the behaviour, Durand, et al (1990), this would ensure the increased likelihood of an accurate hypothesis for the behaviours functions so that any interventions would be more likely to succeed, O’ Neill, et al (1997).
Both Di Terlizzi (1994) and O’ Neill, et al (1997) suggested that to start a functional assessment the use of unstructured interviews, observations and a review of relevant clinical records should be undertaken in order to help build up a picture of the historical context of the behaviours and settings. This would inform us of possible new interventions that might be suggested by the subsequent functional analysis.
In order to gain an insight into Henry’s behaviour the following tools were selected,
The first tool chosen was ‘The Functional Analysis Checklist’ (F.A.C) by Van Houten, et al, (1989). Interviews are good for gaining information about circumstances that relate to behaviour. The Functional Analysis Checklist (F.A.C.) developed by Van Houten, et al, (1989) (See Appendix Two). It is a comprehensive semi-structured interview consisting of 41 questions. The questions attempt to assess whether the target behaviour is associated with biological factors, physical environment, communication, escape, demand factors, elicited or adjunctive behaviour, activity transitions, and/or positive reinforcements (Sturmey, 2001). When using the tool Van Houten, et al (1989) suggested that at least two or more people who have daily contact with the individual should be used to avoid bias.
The next two tools selected were the ‘Antecedent Behavioural Consequence Charts’ (A.B.C.s), and ‘The Motivation Time Sampling’ (M.T.S.) (Durand, 1990).
To support the Functional assessment staff at Henry’s home and day service were asked to complete A.B.C. charts through direct observations. Observations are the foundation of the functional assessment process. It enables us to describe the behaviour at any given moment such as what the behaviour looks like and how often it occurs, as well as its length and intensity. When carrying out observations it is important that carers are objective and record what is seen or heard without making assumptions (Tait & Gender, 2002). Therefore a number of staff on different shifts were asked to observe Henry when his behaviour was challenging. No training was required as the staff were familiar with the charts, although sufficient time was required to complete observations and charts. They were used to determine the patterns in Henry’s behaviour and were collected over a period of one week. Analysis of the charts is often useful in developing initial hypotheses or summary statements of the behaviours.
Momentary time sampling was carried out over a period of three hours a day for five days (See Appendix Three). M.T.S. is an important tool as it helps give an insight into the frequency of Henry’s behaviour. Therefore the M.T.S. is a good tool to be used as it helps identify how many times Henry shows this behaviour and what he was doing at the time it occurred.
Finally an ‘Ecological Analysis’ by Willis, et al, (1989) was carried out to see if the environment is contributing to his behaviours (See Appendix Four). Willis, et al (1989:15) defined Ecological Analysis as ‘Contextual events that might influence a person’s behaviour.’
Using these four tools allowed us to gather relatives’ and carers’ opinions and findings regarding Henry’s needs and management at present.
Having completed the assessment and analysis the information gathered from interviews and clinical records brought to us some important facts. Past reports and psychology assessments suggested that Henry showed certain features associated with autism. Autism has been found in people with Down’s syndrome, so there’s a high possibility that he is affected. Unfortunately Autism is infrequently diagnosed in people with Down’s syndrome (Newman, et al, 2003) and it was unclear as to whether Henry was formally diagnosed.
“Autism presents as an observable, though not uniform, social impairment affecting reciprocal social interaction, impairment in verbal and non-verbal communication in some people with Down’s syndrome” (Newman, et al, 2003:36). Many of the behaviours found in people with Down’s syndrome i.e. obsessive/stubborn/task avoidance, are similar to the problems of people with autism (Bouras, et al, 2000).
A systematic and holistic plan of care was then formulated using the information that was received. The La Vigna and Willis (1989) framework was introduced as a basis for consideration for interventions concerning his self-exclusion as management of this behaviour until now had resulted in Henry becoming agitated and aggressive when confronted by staff at the day service and the home. This used the concept of proactive (ecological, focused support and positive programming) and reactive (crisis intervention) strategies for interventions (Fraser, et al, 1998) (Appendix Five). Allen, (2001) suggests that reactive strategies provide carers with clear plans for how to respond to challenging behaviour(s). Their goal is to help carers achieve rapid, safe, and effective control of out of control behaviours. The reactive strategies should never be used on their own, but should instead be used alongside proactive, preventative plans for changing Henry’s behaviour.
The proactive and reactive strategies that were put into place to reduce Henry’s self-exclusion were environment and communication. Consideration was given to Henry’s environment within the home and day centre as the assessment identified that there was conflict between Henry as a service user and the environment. The suggested reason for this is because of Henry’s autistic nature. Henry would probably feel happier and secure in an environment that meets his needs by providing a high degree of predictability and functional routines at home and the day-centre. Newman, et al, (2003) found that using a structured visual timetable can help people with autism make sense of an activity and give a sense of security and routine. This would encourage a regular order of normal tasks such as washing, dressing, and chores. If changes occur explain clearly the reason for change and give correct information about lengths, time and duration of change.
Many autistic people find imaginative activities difficult and stressful and the assessment found that this was the cause of him opting out of activities because he couldn’t cope. When he was confronted about this by staff he became aggressive and further excluded himself from the group. Where possible these activities should be avoided. He would benefit from smaller quieter groups with less distraction. This would allow him to grow with confidence within the group.
Problems in communication may cause Henry unnecessary confusion and distress causing him to become aggressive and un-cooperative. La Vigna, et al (1989) found that research indicates that instruction giving style is a critical factor in determining whether or not a person is likely to comply. A person who is clear, concise, firm manner, using a tone of voice and body language which conveys a sense of confidence and expectation is likely to gain respect and compliance than one who is unclear, lacks confidence and intimidating. People with autism frequently exhibit communication difficulties with others, from observations, staff lack consistency in style when communicating with him. Henry may have difficulty processing verbal information when it is presented to him and his non-reply is not necessarily non-compliance but non-understanding. This could be true in even simple conversations. When speaking to Henry, try to use the same phrases for tasks so that he can associate a phrase with one task rather than having to work out individual styles of communication. Staff should allow him plenty of time to understand and make decisions; if he is rushed he may find it easier to say no. The more pressure he is placed under the more likely he will become aggressive and withdraw from the activity. If he feels less pressured to avoid a task, he maybe willing to complete it or return to it later. He should not feel the need to resort to aggressive behaviour to get his needs met (Appendix Six).
As previously mentioned, Henry’s hoarding behaviour could be a form of obsessive-compulsive disorder, but at the time we were unable to confirm this. However, through assessments we found that this behaviour served to reduce his stress. This was dealt with sensitively to avoid any unnecessary aggression. At present his carers were managing this behaviour by removing the out-of-date food items with his permission. This seems to be a practical proven and appropriate way of managing the behaviour; therefore, providing it does not increase to a level where it is detrimental to other aspects of his life, no follow on instructions will be provided. However if such conditions did worsen the application of Serotonin Reuptake inhibitors have been shown useful in successfully controlling the condition in individuals with Down’s syndrome (Stravrakaki & Mintsioulis, 2000) and the consultant would be asked to assess him further. Cohen, et al (2002:234) also suggests that in addition to medication, a person with O.C.D. will often respond to a restructured environment that reduces the frustration of the compulsion which we have addressed due to his autistic nature.
The Department of Health (2001) states clearly the importance of empowerment, promoting independence, rights and choices. By respecting Henry’s decision to refuse or leave an activity his autonomy is being respected. As nurses, we have the ability to assist in empowerment, this can, if used correctly, allow Henry’s perspective of himself to become one of a positive nature and which allows self-worth, (Fletcher, 1995) & (Tait & Genders, 2002).
Following the interventions that were put into place, staff had a good baseline whilst working with Henry and reported some improvements in his behaviour. For example, when he had been asked to try a new activity at the day service he would withdraw from the group, but if no new activity was introduced he was happy to stay with his group. The community nurse also arranged a review date to discuss Henry’s achievements and goals after six months to see how he was doing.
Providing predictability and routine to Henry’s activities has appeared through daily observations to be positive in limiting his self-exclusion in activities and hoarding, which in turn reduced his, out-bursts of aggressive episodes. The use of familiar staff and settings has provided Henry with security, thus reducing his stress, which in turn has reduced his behaviours.
In Henry’s case, appropriate style, tone of voice and use of similar phrases has appeared to be useful in reducing incidents of opting-out and aggression in both home and day-centre. The suggested intervention of respecting Henry’s decision to leave an activity has also been successful. If an explanation is given by staff regarding change in activity Henry seems to be able to cope better and if he decides he does not want to participate he will sit close by and watch.
Tait and Genders (2002: 37) stated that, “To deliver care that is both individual and appropriate, it is important to adopt a structured approach to care delivery.”
By taking into account what Tait and Genders stated, I believe that the aim of the essay has been met and that Henry’s behaviour has been reduced through implementation of care plans. Individuals similar to Henry continue to represent an ongoing challenge to the services they encounter however; it was felt that many of the interventions used have appeared to be of benefit in reducing his hoarding and self-exclusion. In general the challenging behaviour seems to be an effective way for Henry to control what is going on around him. By understanding the variation in his behaviour we were able to help him deal with the situations in a positive manner. Whilst it is not possible to ascertain progress in Henry’s behaviour over a longer period of time, improvements should be ongoing. Henry’s case is of a complex nature, with many environmental, physical and social contributing factors, which must be considered in his long-term care.
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