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Involving Parents in Treatment
Eric V. Larsson
Parents have many competing demands for their time. Many have full-time jobs. Many have other children with substantial needs. Many are single parents. For these and other reasons, they may not be involved in the treatment of their child with developmental delays to the extent necessary to fully generalize treatment gains throughout the child's life. When this happens, parents find themselves out of touch with the child's current skills and lacking confidence to follow through with the child. A problem that may arise from this situation is that parents begin to disagree over treatment and interfere with each other's parenting due to lack of knowledge regarding the current state of the child's treatment. Inconsistent treatment then often results, and the child's optimal progress is substantially imperilled.
When this situation exists, one technique that we have found very useful is to change the mastery criterion for each skill. We add a requirement that, before a skill is considered mastered by a child, each parent must be able to obtain the same success level as was obtained by the staff. Initially, parents may find this requirement threatening. However, the following procedure is designed to make this as painless and supportive as possible. In fact, once involved this way, we have found that parents are very satisfied with their participation, feel confident in their knowledge of the treatment, are more likely to volunteer for treatment hours, and generalize their use of skills more readily throughout the day.
First, the senior aide schedules at least one weekly appointment with each parent separately to meet and conduct the generalization assessment. At this appointment, the senior aide has the list of skills mastered during the past week. The aide then presents each skill in turn and assesses generalization to the parent.
For each skill, we use the following procedure. The aide briefly describes the skill and the method being used and answers any questions from the parent. Then the aide models the program as it is typically conducted. During the break, the aide determines whether the child performed appropriately and whether the parent feels ready. Then the parent engages the child in the entire program exactly as modelled by the aide. The aide then gives any necessary feedback to the parent and remodels the program if the child failed to completely generalize to the parent's implementation of the program. The aide and parent then continue to take turns with the program until the child succeeds with the parent at the same level as with the aide.
Several features of this procedure are important. First, the parent attempts the program only after the child has mastered it with the aides. This prevents frustration for both the parent and the child. Second, the aide always models the program before requiring the parent to engage. This immediate modelling greatly improves the parent's fidelity to the program. Third, the child then carries behavioural momentum into the parent's turn, which helps overcome any discrimination that the child has learned between parents and aides. Therefore, if the child fails with the aide, the aide must continue the program until the child performs at the mastery level. If necessary, the behavioural momentum may be maximized by having the parent replace the aide in the chair before the aide finishes the program and then conclude the program immediately with the child. Finally, because the programs cannot proceed properly without the parents' involvement, they are very motivated to keep up this participation.
We have encountered two potential difficulties with this procedure. The first is that the special nature of this generalization appointment causes the aide to disregard the importance of effective reinforcement. However, it is doubly important that the parent use effective rein-forcers, and that the parent be the one who delivers the reinforcers. The second potential difficulty is that the adults tend to sit and talk too long between programs. This often stimulates the child either to disengage into stereotyped behaviour or to engage in attention-getting behaviour to compete with the two adults.
Involving Parents in Treatment: The Program of the Week
As emphasized previously, it is imperative that we generalize the skills throughout the day into unstructured activities. During staff sessions, we generally set guidelines for how often a given program should be prompted and reinforced incidentally during unstructured time. The parents, however, have many daily distracters that prevent them from generalizing the programs, and lack of practice with the programs further inhibits their ability to spontaneously prompt a specific skill. Therefore, we have developed the following procedure to facilitate the parents' generalization of programs.
At each clinic meeting, we specify a program that will be emphasized that week for incidental training. The program is selected because it has been mastered in a structured setting and has functional utility throughout the day. Then the senior aide schedules an appointment with each parent to practice incidentally prompting the skill. The first step is to go to an unusual part of the house or neighbourhood, without standard training materials, and explain and model the program for the parent. The second step is to model how to implement the program in this novel environment. This step is usually the parent's biggest challenge. The aide then prompts the parent to help implement the program in a new setting. The aide takes turns modelling and giving feedback until the parent can independently identify natural materials, SDs, prompts, and reinforcers. Then in the third step, the aide again models the program with the child present until the child successfully responds. Then it is the parent's turn. The aide and parent take turns implementing the program in novel locations until the child makes a successful response to the parent. Finally, the aide gives a treatment assignment to the parent to implement the incidental trial a minimum number of times per day (usually 10 times) and to record the data on a data sheet. Then the aide makes plans to review the progress at the next clinic meeting.
Even though there are many skills that need generalization throughout the day, it is overwhelming for the parents to attempt to generalize all of the programs at once. By focusing on only one program per week, parents can then master and probably maintain their performance with that program in future weeks. By so doing, the parents can effectively master about 50 programs per year (approximately one per week). Once that many programs are mastered, it is likely that the parents can generalize to other types of necessary skills. It is very helpful to post the data sheet in an obvious location, such as the refrigerator door, to prompt the parents to initiate the drill. It is also important to plan for all significant times of day, activities, and locations in order to generalize the skill to as many functional activities as possible.
Because it is very difficult for the parents to get used to working as described previously, it is essential that the aide schedule a training time to implement the skill rather than just assign this task and make the parents feel guilty when they do not do it. Further, it is essential to follow up on the program at the next clinic meeting because the parents may not have gotten around to implementing the skill and, with no feedback, will be even less likely to resume this procedure.
In the 1960s we had expected that, upon establishing the basic treatment methods, we could effectively 'cure' the child in an institutional setting and then release the child with a warm handshake and a sense of a job well done. However, our first outcome study (Lovaas, Koegel, Simmons, & Long, 1973) informed us of the results that we should have anticipated. The children's skills did not maintain in some subsequent environments. This 'failure' was analyzed as a lack of generalization. One response to this analysis was to seek methods of treatment that would generalize more effectively, and we did engage in that course of investigation. However, the more important analysis followed from the basic principle of behaviour analysis: that behaviour is controlled by its environment, and obviously a child's parents are the most significant feature of the child's environment. Indeed, the 1973 study found that the children who were released to those parents who had received modest training were more likely to maintain and continue their gains than were children released to persons who had received minimal or no training.
In response to this study, we chose to focus our treatment on families of young children for whom we had the opportunity to train parents to use the skills discovered in our research program. As a result, in the 1970s and 1980s, we found that we could successfully train parents so that they could then provide quality treatment to their own child, generalize these skills throughout the day, and even hire and train their own staff. This became the stated goal of our treatment. In fact, we came to realize that parents are best judged truly competent when they demonstrate that they can train others.
Further, the need for 24-hour-a-day, 7-day-a-week follow-through is hugely important. Children are learning all day long, whether or not we are planning their learning. The children we most often treat require consistent follow-through, or they do not reliably learn the skills we teach. Even when we provide 40 hours per week of training, they still have an additional 128 hours per week with the parents. It is imperative that the parents have the skills to follow through appropriately during this great expanse of time.
A word of caution. Some parents and professionals become very uncomfortable when we talk of parent training because it conjures up the psychoanalytic theories, very much alive today as parent blaming. Our emphasis has nothing to do with blaming parents for their children's condition. These children do not become disabled due to the environment their parents provide. For example, most families have typical siblings growing up alongside the child with developmental delays. What we are providing is a professional treatment that has been carefully worked out over many years and at great expense. It is not 'normal' parenting—normal parenting does not result in the gains that professional treatment achieves. Normal parenting does not ameliorate the challenging conditions that these children present. However, parents can learn all or most of these professional skills, and they have the motivation and intensity to help their children, even more so than professional persons. Parents have been proving this simple fact over the past 25 years.
To establish a comprehensive behavioural environment that enables the child's therapeutic development, we need to teach all care providers to use the necessary skills. Only then can the child be confronted by pervasive appropriate contingencies for normal behaviour and have limited opportunity to practice autistic behaviours. It is a familiar phenomenon to see a child discriminate one adult from another. The children are neither insensitive to environmental contingencies nor incapable of learning; instead, they are hypersensitive to certain immediate contingencies. They appear to quickly adjust their behaviour to match the contingencies being provided by different care providers. Therefore, until the child's treatment is complete all care providers must be taught to follow through consistently. Until this happens, it will not be the child who has trouble learning; it will be the teacher who has trouble teaching.
We have found that we can efficiently teach parents through the same mechanism that we teach staff: in the clinic and home through one-on-one and group supervision (see R. L. Koegel, Glahn, & Nieminen, 1978). However, we have found that some special considerations are important.
The demands of this treatment represent a comprehensive lifestyle change for the parents and child, rather than a part-time job as for staff. The parents must incorporate treatment skills into their 24-hour parenting style in order for their child to make maximum progress. When they reach a certain level of competence, they could, if desired, train and supervise their own staff, thereby delegating some of the treatment to others.
Because of the typical relationship between professionals and parents, the natural tendency of staff and parents alike is to rely on staff to engage the child and complete programs. In human services and education, parents have rarely been genuinely empowered to take a leadership role in meeting their children's needs. Both staff and parents typically expect the staff to fill the 'expert' role and place responsibility on the staff to maintain quality control over programming; however, these expectations subvert the therapeutic need to fully involve the parents in intervention. Therefore, supervisors must be vigilant to prevent these tendencies from taking hold. Supervisors should look beyond the staff hours to the family's 24-hour day to analyze where the treatment needs augmentation. In clinic meetings, parents must be given a central role in training and decision making. Parents must meet the competencies necessary to train new staff members in the necessary treatment skills.
Considerations Regarding Family Life
At the start, it is important to recognize that parents and their children with developmental delays have a history of substantial failure communicating with each other, and this legacy affects parents emotionally as they attempt to learn treatment skills in front of the treatment team. It is very supportive of professionals to acknowledge this to parents before requesting parent participation, and also to predict the heightened difficulty parents are likely to face due to their shared history with their children. This will help parents face the adversity with less stress. (Fathers may be even more sensitive to failure in front of a group than may mothers.)
When providing feedback to parents, staff should be sensitive to the impact of negative feedback and be careful to outweigh it with genuine positive reinforcement. Even the natural emotional reactions to the most critical negative feedback can be defused if the feedback is given with a smile, with acknowledgment of the humour in the situation, and with reassurance that the error is common among all aides, even the supervisor.
In providing the first independent assignments for parents, the senior aide should assign fun programs that have a high likelihood of child cooperation and fit into the parents' interests. Skills such as hugging and saying 'I love you,' reinforcing activities that cause the child to laugh, and play activities that are special interests of the parents and siblings (e.g., sports, reading together) will help support the parents' maintenance of skills.
Tantrumous behaviour is a special issue. All parents act instinctively to limit their child's tantrums, and with typical children, these actions usually result in effective child rearing. However, such parenting responses may be counterproductive with children who have with developmental delays. Parents may walk on eggshells to avoid tantrums and placate the child as soon as tantrums arise. Therefore, in both clinic- and workshop-based parent training, parents need to learn to address tantrums directly by purposely using reinforcement contingencies for which the child has been known to tantrum, rather than avoiding using these contingencies out of fear of tantrums.
Further, tantrums on extinction may drive spouses crazy. Two parents are not a monolithic unit. Staff may need to create a community of reinforcement within the family for behavioural treatment—in the face of the parents' natural emotional avoidance of tantrums, for example. Treatment will fail if spouses are in conflict because mom makes the child cry and dad cannot stand it. When one parent is following through, a common reaction is for the second spouse to intervene either to placate the child or chastise the spouse. This normal process must be addressed directly during tantrums in clinic meetings by requesting that both parents reinforce the other for following through with the prescribed treatment for tantrums and acknowledge that this is a sign that the parents are effectively working with the child. The supervisor should follow up on tantrum experiences at later clinic meetings to address the effectiveness of this process.
An ironic issue that may arise is that, when the treatment appears to be effective, the parents' motivation may slacken out of overconfidence. However, the student's attainment of advanced skills is critically important, and requires the parents' active involvement more than ever.
Often conflicts arise within the family or between the family and the aide. The supervisor needs to try to maintain a private, one-to-one relationship with the family to give parents a safe forum for discussing these problems as early as possible so that they can be addressed as proactively as possible.
When conflicts seem intractable, the following skills may help. Staff must address conflicts honestly and directly without passive avoidance. The best strategy is to offer a well-timed, direct solution statement, delivered from the supervisor's honest perspective on the needs of treatment.
Solution statements should be in the form of a request for future appropriate behaviour without recrimination for past errors. The statement should offer parents a clearly specified choice and opportunity for negotiation. The statement should be relevant to current treatment goals. It should be realistic. If potential aide action is 'threatened,' it should refer to a previously agreed upon clinical contract. For a rationale, the aide should summarize patterns rather than specific acts, and state a functional analysis of potential therapeutic consequences of the patterns. To problem-solve the types of solutions to offer, the aide should observe immediate, objective interaction styles rather than infer parents' and staff's roles in unobservable processes. If the clinical staffs is the source of the problem, then the supervisor should take responsibility and act accordingly.
If conflict is severe, the solution statement should be well timed. Staff and parents should take a break when real emotions are being acted out. The statement should not be delivered contingent upon an emotional interaction when neither participant will hear it. Instead, it should be offered after a full assessment is made at a later date. It should be offered by a staff person whom the parents like and respect.
The solution statements should embody the best balance of consistency, following through with previously recommended solutions when previous attempts at solutions have failed. Positive reinforcement for objective appropriate behaviour should balance any implied criticism. Each issue should be resolved in turn without allowing issues to fester. Each issue should be assertively followed up at later meetings.
Some behaviour commonly seen in conflict resolution can exacerbate conflict or distract from conflict resolution. Mistakes that are made when attempting to resolve conflict include the following: asking for reasons for behaviour, using qualifiers, stating that there is only one solution, interrupting, telling the family that they will prefer it the staff's way, labelling a person, mind-reading what a person thinks, taking responsibility for the child away from the parent, and reinforcing dependency on staff.
When parent or staff non-compliance is a difficulty, the following principles are helpful:
Promoting Generalization and Maintenance of Parents' Skills
Parenting skills should generalize to new child behaviours, other appropriate parenting skills, or other settings, particularly those settings in which the staff are not present. Behaviours that generalize to novel settings may be seen as independent of training stimuli and are, therefore, likely to be maintained after training. When parenting skills do not seem to generalize or maintain beyond clinic meetings, the following techniques can be considered (Stokes &Baer, 1977).
Program Common Stimuli. Parent training is best conducted in the home in order to bring the trained parenting responses efficiently under the control of home stimuli. Videotaped modelling and specific written guidelines taken into the home help prompt generalization.
Program Sufficient Exemplars. A variety of child behaviours should be presented. More regular contact with parents allows for a greater variety of opportunities to observe successes and difficulties, and therefore more opportunities to instruct. A high rate of appropriate behaviour or fluent performance across repeated training situations is a dramatic demonstration of parent competence.
Instruct Generalization. Programming generalized skills through written and verbal instructions is frequently employed. Trainers assist parents in planning for community settings and give homework assignments.
Recruit Natural Communities of Reinforcement. The development of an ongoing support group through combining isolated parents or including other significant family members can provide for ongoing reinforcement (as well as prompting) of trained skills.
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