While caring for children with DD (developmental disabilities) can in some ways be rewarding (Benson, 2010, p. 218), it can also be extremely stressful. For both parents and professional caregivers, stress is a very common part of dealing with children with ID (intellectual disabilities) or ASD (autism spectrum disorders) (Mills & Rose, 2011, p. 846). One consequence of this kind of stress is a possibility of caregiver burnout. The following paper will examine the concept of "mindfulness" as it can be applied to professional and parental care for children with DD. A number of different research studies will be considered, along with their implications.
Beyond its specific use in assisting children and patients with DD and their caregivers, mindfulness has also been used by researchers and professionals for many other purposes. For instance, cognitive researchers have studied mindfulness to determine if it can enhance cognitive ability in subjects (Noone et al, 2016, p. 1). Other researchers have considered the use of mindfulness in assisting counselors in adapting to multicultural situations (Ivers, et al. 2016, p. 72). Still others have considered mindfulness is a useful technique for leadership development (Yeganeh & Good, 2016, p. 26).
Mindfulness has been demonstrated in a number of studies to increase worker parental satisfaction, as well as the levels of care provided to the child. This was particularly the case for those dealing with aggressive behavior in such individuals (Singh et al, 2016, p. 8). When speaking of mindfulness, researchers are referring to being mindful of present activities and situations, rather than being mindful of the past. The key point of mindfulness practice is that it seems to modify both the behaviors and perceptions of the care providers. This in turn influences how the children being cared for behave (Singh et al, 2014, p. 655.).
Of the several studies examined in this review, the majority found that mindfulness had a direct impact on the interactions between the care recipient and the caregiver. For instance, for a three month period (Singh et al, 2014, p. 646) provided mindfulness training to three mothers whose children ASD. The goal of this study was to determine whether negative behaviors in these children, including aggression, noncompliance and self injury, could be to some extent reduced by the practice of mindfulness. The program involved 12 sessions in which the investigator worked with the mothers for two-hour sessions. After their training, the mothers were to apply what they had been taught about mindfulness over the following year.
During the training sessions themselves, noticeable improvements in the children's behavior were recorded. Additional improvements were noticed in the behavior of the children over the following year. For instance, during the training period itself, aggressive behaviors in children participating in the study dropped by between 6-16%. In fact, when the study was completed one year later the children were showing virtually no aggressive behavior.
At the same time, the mothers involved in the study gradually felt greater satisfaction with the parenting process. Interestingly, the degree of mindfulness in these mothers seems to have been less during the training period than it was over the following year. As the mothers grew more satisfied with parenting because of mindfulness, they used it more frequently.
The same approach and program was used with four other mothers who had children suffering from DD. The additional aim in this case was to improve the social behavior of these children (Singh et al., 2014, p. 647). The results of this secondary study were quite similar to those of the first. While the mothers during the training. They saw a significant reduction in aggression in the children, and they saw a much larger reduction of during the following year at the practice period. He also reported and increase in positive social interactions for their children during training and even more over the course of the year. As before, the mothers involved in the study indicated that they used mindfulness more during the longer practice period than they did during the initial training period. He also saw long-term stress level reductions and increases in the degree of enjoyment and satisfaction they gained from parenting. Unfortunately, although these research reports indicate the beneficial effects of mindful practices, they do not precisely explain how these affect results from such practices.
Research indicates that for professional caregivers the beneficial effects resulting from mindfulness are quite similar to the benefits parents gain. For example, Singh et al. saw similar results in 2016 with staff members working in homes providing care to a number of patients with ID. These caregivers continued to practice mindfulness in their work in the following six months (p. 5).
It should be noted that the topics covered in the mindfulness training program for staff members were essentially the same as those used in the mindfulness training program for parents. The only real differences were introduced to handle the relationship difference between the professional caregiver and the patient versus the parent and the child. The actual delivery of the contents of the program occurring during a two-hour session each week that involved discussions, a review of homework and meditation practices.
The children being supported by professional caregivers using mindfulness training demonstrated small but noticeable reductions in aggressive behavior (both physical and verbal). For instance, during their morning shift staff found that aggressive occurrences for those children with ID dropped from 10.67 to 6.76. In addition to this, the necessity for the use of physical restraints dropped from 2.67 to 0.20.
The effectiveness of mindfulness training for caregivers has also been compared to that of behavior management training occurring during staff ratio changes. Singh et al. (2009, p.199) carried out an intensive five-day behavioral management training study. It involved 18 individual patients with ID and severe behavioral problems, including aggression. 15 caregivers took part in the study over a period of 30-53 weeks, during which time the staff ratio at the facility was raised from 1:2 to 1:3. It was then reduced back to 1:2. During this early part of the study (in which the researchers were creating a baseline for comparison), two staff members were assigned the task of monitoring the behavioral problems of care recipients, as well as how much they learned. Mindfulness training was then introduced over a five day period. Following this, the ratios were then adjusted and monitoring took place to see if the results were different.
Researchers found that while the children did benefit to a degree from the interaction they had with caregivers following the caregivers training and behavior management, the children benefited much more following the caregivers training in mindfulness. This was the case irregardless of the staff ratios. In the same way, incidents of aggression and the need for physical restraint was somewhat reduced by behavioral training, and almost entirely eliminated by mindfulness training.
Mindfulness training also had an effect on the caregivers themselves. Before the training, the baseline for staff satisfaction was 50.3. While it increased slightly after behavioral training to 56.3, it jumped to 87.7 following mindfulness training. Furthermore, friends and family of the care recipients made quite clear that they were also very pleased with the level of care given following mindfulness training. In this category, while behavioral training increase the satisfaction of friends and family with the care being provided from 60.7 to 65.7, mindfulness training resulted in an astonishing 94.3% satisfaction level for these groups.
The intensive, five-day mindfulness training program differed in some ways from the longer, 12 week program, but the basic ideas and concepts were often the same. The fundamental idea behind mindfulness and notion of being cognizant of one's thoughts and breathing, as well as the use of meditation techniques, were used in both. The more intensive program differed from the standard program because it gave less attention to arousal states and greater attention to the fundamental differences between behavioral training and mindfulness training. However, the instructional approach was virtually identical. The researchers left it unclear in their study precisely who carried out the mindfulness training and where it was done. Researchers have clearly demonstrated that the use of mindful caring has (in addition to reducing any behavioral problems presented by children) also enhance their overall happiness.
The short and long-term effects of both training and behavioral skills and mindfulness have been measured through the careful observation of three care recipients (all of whom suffered from empty). This work was carried out over 35 weeks in a series of sessions that looked at the care recipients for any indications of happiness (such as laughing, joking, playing or smiling). When these care recipients were in the hands of the staff that had been trained in mindfulness, indications of happiness increased by as much as 437%. Interestingly, there were no clear indications of improvements in happiness when the care recipients were interacting with the staff who had received training in behavioral skills.
Another study by Noone and Hastings in 2009 looked at specific aspects of intervention (p. 44). The program they considered was PACT (Promotion of Acceptance in Caregivers and Teachers). The study for this program involved 28 male and female professional caregivers dealing with individuals suffering from ID ranging from moderate to severe. At only 1 1/2 days, the intervention testing period was much shorter than in the other studies mentioned above. This study closely examined the stresses placed on professional caregivers and their psychological and emotional well-being.
At a one-day workshop, these caregivers used meditative techniques to better understand the usefulness of mindfulness, such as by paying attention to their inner thoughts and physical sensations. When they return in six weeks, they participated in a follow-up workshop designed to strengthen and enhance their mindfulness. This was done by reviewing the homework they had done and by introducing one new exercise. This published study only provided information about the content of the intervention, and provided no further details about the instructors or the instruction methods.
Of those participating, only 14 completed the SSQ (Staff Stressor Questionnaire) and the GHQ-12 (General Health Questionnaire) provided by the researchers during the workshop. The results of these two questionnaires suggested that the use of mindfulness (combined with the use of acceptance exercises) did yield a positive result with regard to staff well-being. However, it had a negative effect on the stress that the staff were experience.
The next question is precisely what occurs when professional or parental caregivers of those with DD are trained in mindfulness. The results of this review make clear the fact that the care recipients and care providers are closely connected. Furthermore, the more that caregivers are aware of and practice mindfulness, the greater the reduction in behavioral issues their child care recipients will demonstrate and the more they will learn in the process. These indications are of great importance, and again bring up the question of precisely how mindfulness can have this effect.
The question of defining mindfulness is a matter of some debate in the literature. Although the procedures used in interventions that are described as examples of mindfulness are clearly documented by researchers (Singh et al. 2016, p. 8), the same researchers rarely give a clear definition of what mindfulness is. Moreover, they frequently define it in very different ways. However, mindfulness essentially means paying close attention to what the care recipient is doing and one's own reaction to that. The essential elements of mindfulness that can be derived from this definition are that it involves close focus/attention and a clear awareness of what is going on at the present moment. Mindful caregivers pay attention to both external and internal experience as it is occurring.
When parental caregivers of those with DD employee mindfulness, it has the effect of benefiting both the recipients of care and the providers of that care. For parents, this effect is an enhanced interaction with the child, greater satisfaction, happiness and reduced parental stress (Russell, 2011, p. 215). However, the results for professional caregivers are not quite so clear cut. They certainly include increased satisfaction with their work (Singh et al. 2015, p. 9) and a greater sense of well-being (Noone and Hastings, 2009, p. 53). However, work stress seems to actually increase for these care providers, although it is to a very small extent.
The begs the question of just why this approach is able to reduce stress for parents caring for children afflicted with DD but has the opposite effect for professionals. This seems to be particularly the case with professionals who are tasked with caring for adults afflicted with DD. For professionals, it could be that the mindfulness classes themselves are stressful. In other words, professional caregivers required to attend such workshops may view these as adding to their workload. The fact that 50% of the attendees of such workshops fail to come back for the follow-up supports this supposition (Noone and Hastings 2009, p. 48).
Another potential explanation for this difference is the length of mindfulness training and follow-up practice. In order for mindfulness approaches to be effective, Singh emphasizes that practice has to be ongoing until mindfulness becomes habitual (Singh et al., 2009, p. 201). It's important to note that the only study to report increased work stress following mindfulness intervention (Noone and Hastings, 2009, p. 52) was fairly short as compared with other studies that have been conducted on the same topic. This may have impacted the result. This is because how mindfulness practice is perceived is closely related to the amount of time that the individual spends practicing. In other words, it may be that long-term practice in mindfulness allows the professional caregiver to become more effective in the use of mindfulness in their work, and such a fluency with mindfulness may in turn reduce work stress.
Another aspect of this issue is how parents of children suffering from ASD and ID perceive their own level of mindfulness. Most parents felt (prior to training) that they were being extremely mindful of their children. However, during training they came to perceive their level of mindfulness as having been relatively low. Following training as these parents attempted to apply what they had learned, they felt that there mindfulness had risen even higher than it was during training (Singh et al. 2014, p. 652). These parents indicated that while (prior to trading) they thought they were being mindful of their children, they learned during training that mindfulness required more than they actually thought. More than this, once they started to practice mindfulness and develop it as a habit, they grew more confident about their mindfulness. This outcome makes clear that long-term practice is essential for caregivers to get the most out of mindfulness techniques.
As indicated above, a central feature of mindfulness that has been noted in a number of studies is the interconnected nature of the relationship between children being cared for and their caregivers. This "crossover effect" this "crossover effect" has been reported by all the studies mentioned above, with the exception of that conducted by Noone and Hastings in 2009 (the difference in this last study may again be related to its short duration). For instance, those mothers with children who had ASD or DT who practiced mindfulness all noticeable reductions in aggressive behavior in these children. In the same way, when adults with severe ID interacted with caregivers who had mindfulness training, they were far less aggressive and seemed happier, which by extension implies the same for children (Singh et al., 2009, p. 200).
In conclusion, the above seems to make it clear that there are a number of significant benefits for both professional and parental caregivers when they make use of mindfulness when caring for children suffering from DD. These benefits apply both to the caregiver and to the receiver. At the same time, it is not yet entirely clear what causes such benefits. While the more personal study carried out by roughly 2011 offers some insight into the question, a far more systematic and wide-ranging study needs to be carried out if mindfulness is going to be more widely accepted and used in the future. Study should be designed carried out with the intention of collecting both qualitative and quantitative data on the effects that mindfulness practice has on care recipients, professional caregivers and parental caregivers. Control randomized trials using much larger samples than those used in the above described studies are essential to demonstrate the true effects of mindfulness practice. Furthermore, a better understanding of the features of intervention is also essential. The ideas embodied in the practice of mindfulness are fairly new in the field, which is why it is essential for any follow-up studies to provide a straightforward and consistent definition for mindfulness so that the studies themselves can be meaningfully compared and evaluated.
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