Roman Weigl is an occupational therapist in the Department of Paediatrics at the Hospital of St. Pölten, St. Pölten, Austria, Europe.
INTRODUCTION
I am the sole occupational therapist in the department of paediatrics. There are three wards, one neonatal intensive care unit; one for children up to three years and one for children three to eighteen years. My role involves the assessment and management of children and their families. The children have various diagnoses, typically they have chronic illness, or they have had severe accidents, but also included are children with psychiatric, learning and developmental disorders.
PURPOSE
The purpose of this paper is to demonstrate how the Occupational Performance Model (Australia) (Chapparo & Ranka, 1996) has been applied within this setting to guide the scope and the focus of planned intervention.
This will be accomplished through examination of one case study. Using selected constructs within the model, discussion of the case will include an outline of:
| 1. | Occupational role assessment of a child and her mother |
| 2. | Developing aims and setting goals for the child and her mother |
CASE STUDY: ELKE AND MRS. R.
Elke is a five year old only child in a family with two working parents. She regularly attends kindergarten and spends time with her grandmother.
While at her grandmother’s house, Elke pulled a pot of boiling water from the stove and received severe scald burns to 25% of her body. Particularly affected were her right upper extremity, both shoulders and back, her right ear and neck.
Medical treatment consisted of cleaning of her wounds, wound debridement and plastic surgery to cover burned areas with Amnion and Xenotransplants. She was immobilised and positioned in an air bed and isolated to reduce the risk of infection. Her mother, Mrs. R. was able to room-in with Elke.
ASSESSMENT
Elke
This assessment was based on clinical observation of aspects of occupational performance, in response to a request for occupational therapy to assist in adjustment to hospitalisation.
Environment
The initial occupational therapy assessment of the child took place in her room in the Burn unit with the child positioned in supine in the air bed. Thick bandages covered all burned surfaces. Elke, her mother and therapist were the only people present. For hygienic reasons, there were a limited number of toys available. Assessment focussed initially on the perceived occupational roles of the child and her mother as well as their reactions to the injury and hospitalisation.
Occupational Role
Prior to her injury, Elke’s primary occupational roles were those of self maintainer and player. When seen, Elke showed no desire to interact with any other person, or objects, apart from her mother. Her primary occupational role performance was related to that of self maintainer - surviving this life threatening situation. To do this she sought constant emotional support and nurturing from her mother. Elke also fought against the often painful medical treatment. This behaviour too, related to Elke’s perception of survival in a sensory world that to her, was uncomfortable and threatening.
Elke showed no inclination to engage in play behaviours, even those that did not require physical activity. Three dimensions of her player role could be described relative to her perception of control, source of motivation to play and suspension of reality (Bundy, 1991; Ellis, 1973; Neumann, 1971). All three dimensions can be viewed from whether the locus of control is internally directed by the child or externally directed by others. The more the control is directed by external forces, the less the child is likely to show playfulness.
Perception of control refers to the child’s freedom to decide how to play, choose what and whom to play with (Neumann, 1971). This relates to the ‘doing’ aspects of occupational roles in the Occupational Performance Model (1996). Relative to play, Elke perceived she had no internal control. Much of her day was organised by the required medical treatments which, for the child, were frightening and painful.
The source of motivation relates to the child’s perception of the reward associated with the play. This aspect of play relates to the ‘knowing’ dimension of role in occupational performance. In Elke’s case, she knows that engagement in her usual play behaviours brings pain. There is no rewarding pleasure.
Suspension of reality refers to whether the child is able to temporarily suspend aspects of the real world situation to engage in an imagined situation. This relates to the ‘being’ dimension of role performance in occupational roles. Elke was forced by circumstances of pain, illness and the hospital environment to be constantly aware of all of the constraints of reality. It was not possible for her to even momentarily suspend reality to engage in imagined player roles – to ‘be’ anything other than a child who is burned.
Mrs. R.
Mrs. R., Elke’s mother, used her vacation time to stay with Elke 24 hours a day. Observations of her interaction with Elke over time showed that she had taken over every part of the child’s self maintenance tasks and routines. She rarely took a break to rest, or to engage in tasks and routines to maintain herself. Despite this, she still did not perceive that she was giving enough support to her child. Running through the interview were statements relative to her role as a mother, such, as “I’m not doing enough. I can’t help my child, I’m not a good mother to my child”. For Mrs. R., engagement in the occupational role performance of mother, by assisting her child with her daily care fulfilled the ‘doing’ aspects of role performance, but did not meet the ‘knowing’ aspect of the present role demands (“I don’t know what to do for my child”), and did not fulfil the satisfaction or ‘being’ dimensions of mothering (“I’m not a good mother to my child”). In addition, she voiced conflict between various cognitive and intrapersonal operations relative to her view of future occupational performance, thereby confounding her perceived ability to remain stable and supportive. For example, “It could have been worse” (cognitive) and “This is the worst thing that has happened to me” (intrapersonal).
Mrs. R. expressed a perceived lack of control in her role as a mother in the hospital situation. She verbalised need for additional personal support to maintain herself. They received visits from Mr. R. after his daily work, which was perceived as supportive, but there was no other self maintaining resource available to her. The grandmother’s visits were not viewed as supportive as she was dealing with her own severe feelings of guilt over the accident which had occurred at her house.
AIMS OF INTERVENTION
Severe burns cause major disruptions to a variety of elements of human function. The resulting disordered occupational performance can only be partly explained by the existing biomechanical and sensory motor damage. Children and their families have very individual reactions to the injury and each family unit requires individual consideration of the complex situation that exists.
In this case, the Occupational Performance Model (Australia) (Chapparo & Ranka, 1996) was used to plan and prioretize occupational therapy aims and goals of intervention for Elke and her mother. This model is used as it offers the scope required for planning assessment and intervention for children with severe burns and their families. In this hospital, it has been useful in assisting the therapist to obtain a systematic overview of the child and the family and to determine in the acute stage of intervention, what would be the most useful therapeutic action.
The Process of Reasoning Using Occupational Performance
As explained by Chapparo (1996), use of the model in practice starts with determination of chosen or needed occupational roles.
Elke
| a. | Roles |
Elke’s existing roles as determined by interview, history and observation were those of:
| Player | |
| Self-Maintainer | |
| Kindergartener | |
| Friend | |
| Daughter |
Through observation and talking with Elke and her mother, three of these occupational roles were prioretised and targeted for the focus of occupational therapy intervention: self-maintainer, rester and player. Self maintenance was necessary for the child to survive and begin to participate in her own care. Rest was required so that she could develop some daily rhythms of rest and activity, that were lost after the injury. Play is the prominent occupational role of childhood (Pratt & Allen, 1989), and one of the fundamental childhood occupations through which Elke could learn to cope with the prolonged physical and psychological pain experienced during hospitalisation. Participation of the mother and child together in each of these roles supported the integrated roles of daughter and mother.
| b. | Tasks and Routines required to support these targeted roles |
The following tasks and routines were targeted for focus in occupational therapy intervention, as they related to the role performance, and became the aims for Elke’s occupational therapy.
Self maintainer
| * | to survive |
| * | to develop healthy strategies for enduring intrusive medical procedures |
| * | to become familiar with hospital routine and staff |
| * | to develop strategies to cope with pain |
| * | to eat and drink independently |
Rester
| * | to develop usual routines of staying awake during the day and sleeping at night in preparation for going home |
Player
| * | to have the desire to play |
| * | to develop satisfying play strategies within the confining conditions, such as bandaging and skin grafting |
| * | to have contact with a play partner |
| c. | Components of occupational performance that are critical to the targeted roles and tasks |
Biomechanical component
| * | to encourage movement in those joints and body segments that are not immobilised. |
Intrapersonal component
| * | to develop the intrinsic motivation to move and participate in tasks and routines |
| * | to develop a sense of control through self-maintenance, and play occupations. |
| * | to develop a feeling of security within the hospital setting |
Interpersonal component
| * | to find support through interaction with mother and others in the hospital environment |
Cognitive component
| * | to build a knowledge store of medical and hospital procedures to reduce her fear of the unknown |
| * | to assist Elke to rehearse and prepare cognitive strategies to cope with her daily medical routines in the form of games, counting, verbalisation and visualisation. |
| d. | Core elements of occupational performance |
Body
| * | to reduce the biomechanical constraints on everyday activity to the minimum |
| * | to reduce pain and itching caused by burned tissue and grafting procedures |
Mind
| * | to use the mind to imagine and visualise past and future events and temporarily suspend the reality of trauma |
Spirit
| * | to support a sense of the will to live, and a purposefulness to daily activity |
| e. | External Environment |
The major difficulty faced at this point in care is the risk of environmental deprivation. This can be reduced by:
| * | increasing the opportunities for social contact with other children |
| * | increasing the sensory stimulation by access to an increased variety of toys, wall murals, photos |
| * | increasing the opportunities for pleasurable physical contact and movement through adapted equipment, positioning and handling that facilitate nurturing touch, as opposed to the touch generated by medical procedures |
Goal Examples
The following are examples of measurable goals that were developed from a number of the stated aims.
| * | Elke will initiate play with a chosen toy (facilitation of playfulness) |
| * | Elke will continue playing with the therapist without her mother for 30 minutes without stress (reduction of fear) |
Mrs. R.
Tiffany (1978) noted that occupational therapists in acute paediatric settings could expect to spend 50% of their time working with adults under stress – the client’s families. This percentage probably increases when family members are rooming-in. In using a family centered approach, occupational therapy must consider, not only the injured child, but also the participating family members: in this case Elke’s mother.
| a. | Roles |
Mrs. R’s existing roles as described by her were:
| mother | |
| partner and wife | |
| self maintainer | |
| worker |
The interview revealed the role of mother to be the most pressing issue for Mrs. R. Repeatedly, the theme of “How can I be a good mother to my child now?” was raised. It became obvious during the observations of mother and child interactions that Mrs. R. needed some assistance with her own self-maintenance, so that she could be in a position to support her child in a mother role. It was equally obvious that her perception of her ability to carry out her mother role as being “not good enough” needed to be transferred into a more emotionally satisfying state. After talking with Mrs. R. the prioretised role performance that was targeted included:
| Self maintainer and Rester | |
| Mother | |
| Partner and wife |
| b. | Tasks and routines that are required to support identified roles |
Self maintainer and rester
| * | to be able to develop routine periods of rest |
These sleep/rest/activity cycles will be linked to Elke’s sleep/wake daily routines.
| * | to find and develop family and hospital resources that will assist with the time required for looking after Elke |
| * | to develop routine ‘time away’ strategies that can be used by Mrs. R. for personal recuperation |
Mother
| * | to give guidance about how to support her child physically and emotionally under the changed conditions (hospital) of mothering |
| * | to give assistance in how to cope with a child who is under severe stress |
| * | to give assistance in the form of adaptations to assist in handling Elke during routine daily tasks |
| * | to support and affirm her skills as a mother |
| * | to support playfulness between mother and Elke |
Partner
| * | to develop strategies and routines which will support Mrs. R.’s need to engage in her valued role as a partner |
| c. | Components of occupational performance that support the targeted role |
Cognitive Component
| * | to build a knowledge store of hospital routines and procedures to alleviate fear of the unknown |
| * | to develop a image of Elke’s future roles and function which supports a realistic but positive outcome |
| * | to know that she can leave Elke for short periods with another person |
Intrapersonal Component
| * | to feel competent in her role as mother of a child with an acute, and severe medical disorder |
| * | to be able to separate from Elke for short periods without feeling anxious |
| * | to feel a sense of fulfilment and mastery in her ability to nurture Elke and meet her needs |
Interpersonal Component
| * | to establish social networks that enable her to find support through specific hospital staff, other parents and partner |
| e. | Body/Mind/Spirit |
| * | reduction of exhaustion |
| * | to develop a sense of control within the hospital environment |
| * | to develop a sense of hope and meaning for herself, Elke and the family unit |
Goal Examples
Examples of how some of the aims were amalgamated and operationalised into measurable goals are as follows:
| * | Mrs. R. will be able to leave Elke’s room for 1 hour to complete a self-maintenance, leisure or social task. (self maintainer role and tasks) |
| * | Mrs. R. will learn to position Elke so that she is comfortable during self maintenance routines (mother role, security with role functions for a child with severe disability) |
INTERVENTION
Short term goals such as these were gradually developed and met over time, until Elke developed some independent self maintenance and play skills. Similarly, Elke’s mother gradually became more secure in her role as a mother of a child who has severe burns, and began to balance her various chosen and needed roles.
One intervention example
During one therapy session which aimed at the facilitation of play, finger puppets were introduced to Elke by the therapist. The puppets had to be frozen for several hours before the session for infection control. Finger puppets were chosen in respect of the biomechanical component constraints imposed on Elke, including immobilisation of proximal parts of the limb, finger motion and supine positioning. Thick bandaging and fragile skin made regular contact with many toys impossible.Finger puppets gave Elke the opportunity to physically play using the minimum of body movement. Initially, she directed the puppet’s actions as they were worn by the therapist, fulfilling both the ‘knowing’ and ‘doing’ dimensions of playing. Using puppets, the Elke came to realise that it was possible to engage in play without feeling pain and discomfort.
While imagining and acting out conversations between the puppets, the child was free to suspend reality and choose various play themes. Through play, Elke began to explore self initiated activity, to direct her environment and experience rewarding social contacts with someone other than her mother (Fazio, 1997; Oaklander, 1992).
SUMMARY
This paper has briefly outlined how the Occupational Performance Model (Australia) was used to construct an framework of intervention for a child who had sustained severe burns and her mother. Constructs within the model were used to develop a picture of the individual and associated occupational performance needs of both mother and child as a beginning to intervention.
REFERENCES
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