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Parenting children with developmental disabilities has the potential to provoke unique stress management needs (Singer, Ethridge, & Aldana, 2007). For strategies to be effective, they must be based on the specific needs of a population, and must meet the consistent and continuous demands faced by this parent population (Singer et al., 2007). The goal of this paper is to define and describe the population of parents providing care for their developmentally disabled children, the research related to stress management techniques, and the stressors common for this population. Further, it will explain the selected stress management strategies, describe the stress management handouts included herein, and justify the utilization of these techniques. It will explain the usefulness of the stress management workshop, how it may be useful in the future and how it may contribute to social change.
Parents of Developmentally Disabled Children
There is an abundance of research on the stress experienced by parents of children with developmental disabilities (Singer et al., 2007). This population is traditionally thought to experience chronic deleterious effects from the stress of parenting their children. These effects include ongoing sadness, isolation, an increased risk of psychological and physiological illness, and a higher likelihood of divorce (Singer et al., 2007). Further, these parents must contend with psychosocial problems in siblings of the child with developmental disabilities (Pelchat, Bisson, Ricard, Perreault, & Bouchard, 1999).
The ability of parents to adapt to their child's disability can be identified on a spectrum with some parents experiencing long-term, severe chronic stress to reasonable and normal levels of adaptation and the ability to manage the stress of caring for their child (Singer, et al., 2007). Singer (2006) found up to 70% of parents with children with developmental and intellectual disabilities did not experience an increase in stress compared to parents without developmentally delayed or disabled children. However, approximately 35% of mothers of children with developmental and intellectual disabilities had more episodes of depression and the episodes were more severe than parents of typically developing children (Singer, 2006).
Common Stressors for this Population
The potential exists for severe stress specific to the population of parents of children with developmental disabilities. The most commonly reported symptom for this population is depression (Singer, 2006) and feelings of intense isolation (Gupta, 2007). Additionally, it is not unusual for these parents to experience economic strain and emotional and social stressors associated with their child's disability (Woolfson & Grant, 2005). Although this parent population may not experience recognizable levels of stress and depression, they may experience an accumulation of stress because of an unrecognized chronic low level of stress associated with parenting their children (Hastings & Beck, 2004).
Trute and Hiebert-Murphy (2002) found interventions and stress management strategies for this population should take place at the time of initial diagnosis, which is ordinarily perceived as a crisis and an experience that provokes a range of emotional responses. Some disabilities cause more stress than others, and the disability causing the parental stress should be considered (Gupta, 2007). Interventions and stress management strategies must take into account proficiency in English as well. Further, the educational level of the parents has been proven to be determinants of parental stress and should be considered in the development of stress management strategies (Gupta, 2007). Although several factors must be identified and addressed, parental stress can be mitigated through comprehensive care, even when parents face chronically stressful conditions (Hastings & Beck, 2004).
Research and Three Stress Management Strategies
Cognitive Behavioral Strategies and Self-Care
For parents of children with developmental disabilities, the element that determines the
overall stress load of the parent is the subjective interpretation of the circumstances (Trute & Hiebert-Murphy, 2002). Whether parents appraise the situation as a threat or crisis will ultimately determine their coping strategies and ability to cope. The cognitive appraisal, according to Lazarus (1991) is the interplay of mediating and moderating variables including personality style and the nature of the situation. Singer et al. (2007) found that the most salient aspect of the families coping with the distress of a developmentally disabled child was their ability to be resilient. However, even parents and families who were characteristically resilient faced unmanageable stress at times. Mothers of developmentally disabled children are especially vulnerable to psychological distress and depression (Singer et al., 2007). Women, in general, are more likely to experience depression than men (Zender & Olshansky 2009), which may be the result of the ongoing underlying fluctuation of hormones (Deecher, Andree, Sloan, & Schechter, 2008).
Since cognitive appraisals are pivotal in the ability to manage stress, changing parents' subjective interpretation of their family situation may be effective in the development of adaptive coping strategies (Singer et al., 2007). Cognitive behavioral training (CBT) directly targeted parental stress and provided the parents with tools to effectively manage stress. In addition, self-management skills (self-care), which has shown consistent benefits in this population, should be taught and used proactively to reduce and prevent psychological distress (Nixon & Singer, 1993; Singer et al., 2007). By managing their own well-being and their cognitive appraisals, parents were less threatened by their circumstances, and their stress was reduced (Singer et al., 2007). In effect, the parents were given resources that strengthened their ability to cope, which indirectly caused them to reassess the threat of their environment.
Family Systems Therapy
Because family quality of life is affected by a family member having a developmental disability, families, especially those with additional children must find ways to adapt to the challenge of having a developmentally disabled child or sibling (Singer et al., 2007). Family therapy can help each of the family members adapt in a positive and personalized way to the radical change in their family (Pelchat et al., 1999). In addition, family therapy seeks to find the benefit and the positive contribution made by each family member, including the child with developmental disability (Pelchat et al., 1999). Strategies for the effective family management of stress should include changing negative and detrimental perceptions developed from the initial psychological shock of learning they have a family member with a developmental disability (Dukmak & Aburezeq, 2012). This therapy should foster healthy family adaptation and encourage spouses to support each other. In addition, families should be taught and encouraged to acknowledge and respect the contribution of each family member in their joined effort to adapt (Pelchat et al., 1999). Fostering relationships with others can help the family develop and maintain resources to help them cope longitudinally (Pelchat et al., 1999).
Description of Three Handouts
The three handouts provide a positive, yet realistic message to parents of developmentally disabled children. In addition, each handout is personalized for these parents, and explains the effects of the three distinct stress management strategies on their particular stressors. The first handout explains the benefits of cognitive behavioral training and how it effects the experience of stress. The second handout presents the topic of Self-Care, and the importance of caring for oneself and maintaining personal health and well-being. The third discusses Family Systems Therapy and its befits for families of developmentally disabled children. Each of these stress strategies are discussed as single therapies and as adjunct therapies.
Justification of Strategies
Psychosocial stress has been explained as an incongruence between an individual's needs and the individual's environment (Storch, Gaab, Küttel, Stüssi, & Fend, 2007). Lazarus (2005) further defined stress as a result of the cognitive appraisal of a situation, what is being threatened by the circumstance, and whether and to what extent the individual believes he or she can affect the situation. Trute and Hiebert-Murphy (2002) found similar results that cognitive appraisal is the pivotal point upon which an individual creates the relationship between the stressor and the ability to adjust. This is true with the parental cognitive appraisal of the impact or threat of a child's developmental disability (Trute & Hiebert-Murphy, 2002). CBT and cognitive stress reappraisal has been shown to have powerful and longitudinal effects on stress (Storch et al., 2007).
Multi-faceted interventions implemented over longer time frames are more effective than single component interventions (Singer et al., 2007). The use of CBT, self-management tools, and family therapy was more effective than the use of either intervention alone. Lazarus (1991) believed stress is a complex interplay of a variety of components that include cognitive appraisal, the perception of available resources, and mediating and moderating variables. Utilizing a more complex combination of stress management strategies may be consistent with Lazarus' findings. The addition of family therapy fosters the growth of the family as an entity, and it places value on the psychological experience of each family member (Pelchat et al., 2012). Families have an increased vulnerability to stress because of their primary stress of raising a child with developmental disabilities. This stress affects each family member and influences how the parents raise their other children (Dukmak & Aburezeq, 2012).
An Application for the Future and a Contribution to Social Change
The workshop and presentation included in this project aim to ameliorate the stress of parenting children with developmental disabilities. It is based solely on empirical research and designed to positively affect parents and families under stress. Until research uncovers new and more appropriate information, this workshop is a model for future workshops and interventions for this population. Developing a plan grounded in evidence quickens the potential for social change in the large and diverse population of families with developmentally disabled children. When even one segment of the population is changed, this action is social change.
Conclusion
Parenting children with developmental disabilities has the potential to cause unique, extensive, and chronic stress (Wolfson & Grant, 2006). Three effective interventions for stress management in this population may include CBT, self-care, and family therapy (Singer et al., 2007). Developing a complex strategy that can be implemented long-term is salient for this population because multi-faceted interventions are more effective than single component interventions when presented over a longer period (Pelchat et al., 2012). The intervention workshop discussed herein includes three handouts to be presented to parents and families along with the slide presentation. This comprehensive stress management strategy addresses quality of life for the family of the developmentally disabled child and fosters the perception that children with developmental disabilities have a positive contribution to make to their families (Pelchat et al., 2012).
Workshop Evaluation
Program evaluation, or in this case, the evaluation of a workshop, is an analytical process of collecting, interpreting, and using the information to determine the workshop's effectiveness, and whether it is accomplishing what it was designed to do. If a program cannot prove its effectiveness, it may be difficult to determine its need or its value. Stake holders, especially the participants in the workshop, must be confident that the service they are purchasing is valuable, valid, and effective (Spaulding, 2008). The workshop evaluation makes this possible. The goal of this paper is to describe the evaluation method appropriate to assess the effectiveness of a stress management workshop, and a justification of the selection.
Evaluating Workshops
For the sake of accountability, programs, such as the Workshop being evaluated, must meet the needs of the intended population, otherwise, they are ineffective and inconsequential (Astramovich, & Coker, 2007). An effective workshop evaluation provides professional worth and proves responsibility and accountability to participants and other stake holders. For the evaluation of the Stress Management Workshop for Parents of Developmentally Disabled Children (the Workshop), a summative evaluation is used. This is a prudent choice because as part of the Workshop development, it is necessary to measure the outcomes of the Workshop according to the participants' experience (Spaulding, 2008). D'Eon, Sadownik, Harrison, and Nation (2008) found that self-assessments, such as the Evaluation for Workshop Participants attached hereto, were valid for evaluating the effectiveness of workshops. Findings from the evaluation may be integrated into the ongoing development of the Workshop.
Questions for Evaluation
A primary goal of the evaluation was to determine participants' thoughts, feelings, and behaviors in several domains, including overall quality of the workshop, changes in experiences of stress, identifiable changes in behavior, program comprehension, and the general workshop environment. In each of these domains, the goal was to ask questions that would contribute to the assessment of how they perceived their experience, how they felt throughout the experience, and what they have done or planned to do because of the experience. In each of the domains, the first question elicits a response of thoughts and perceptions, the second, feelings, and the third, accomplished or intended behaviors. Identifying differences in perception, feeling, and behavior seemed important because the overall intention of the workshop is to effect the individual on various levels of experience. For example, if the participant enjoyed the Workshop, but did not experience behavioral change, the Workshop was not wholly successful. Similarly, if the participant expressed positive behavior changes as a result of the program, yet would not recommend it to others, this may be a point of contention to examine.
Participatory-Oriented Evaluation
The evaluation of the Workshop utilizes a participatory-oriented approach because the workshop developer seeks to identify the Workshop's effects on the population for which it was designed (Spaulding, 2008). It is a results-based, outcome-oriented evaluation developed to provide accountability to the participants and gain diagnostic input to determine its deficiencies and shortcomings according to the Workshop participants. Patton (1988) believed evaluations should be accessible to participants and aim toward responsiveness to participant needs. The feedback is meant to address issues or shortcomings and to integrate the feedback into appropriate alterations to the program or workshop (Spaulding, 2008). Participatory-oriented evaluations have traditionally been employed in educational settings (Cousins & Earl, 1992) and this workshop format seems to fall into an educational category. In any event, evaluating the outcomes experienced by the participants and responding to those experiences is a critical component to measuring the ultimate success of the Workshop.
Post Workshop Evaluation
The evaluation will be implemented during the closing presentation of the Workshop. Participants will be asked to supply an email or physical address to which a follow-up evaluation will be sent six months after the Workshop. The follow-up evaluation will be the same as the post-presentation evaluation and designed to assess participants' durable behavior change and the Workshop's utility over time (Steinert, Boillat, Meterissian, Liben, & McLeod, 2008).
Conclusion
The effectiveness of an intervention, such as the Workshop, depends, at least in part, on the effectiveness of the evaluation and the integration of information gained from this assessment. To gauge its worth for the intended population, a workshop must be thoroughly and accurately evaluated. The attached evaluation is summative, and a results-based, outcome-oriented, self-assessment for participants of the Workshop, designed to evaluate the Stress Management Workshop for Parents of Developmentally Disabled Children.
References
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Singer, G. H., Ethridge, B. L., & Aldana, S. I. (2007). Primary and secondary effects of parenting and stress management interventions for parents of children with developmental disabilities: A meta-analysis. Mental Retardation and Developmental Disabilities Research Reviews, 13(4), 357-369. doi: 10.1002/mrdd.20175
Storch, M., Gaab, J., Küttel, Y., Stüssi, A., & Fend, H. (2007). Psychoneuroendocrine effects of resource-activating stress management training. Health Psychology, 26(4), 456-463. doi:10.1037/0278-6133.26.4.456
Trute, B., & Hiebert-Murphy, D. (2002). Family adjustment to childhood developmental disability: A measure of parent appraisal of family impacts. Journal Of Pediatric Psychology, 27(3), 271-280.
Woolfson, L., & Grant, E. (2006). Authoritative parenting and parental stress in parents of pre- school and older children with developmental disabilities. Child: Care, Health & Development, 32(2), 177-184.
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