A sad story has been in the news recently about a parent who allegedly murdered her children who were diagnosed with autism. 911 tapes and other evidence indicate that the family was having difficulties coping with the diagnosis and care of these children.
Several years ago I put some thoughts together regarding efforts I wanted to make in my own private practice to support mental health of parents. I based my original ideas on Leading Health Indicators of the Healthy People 2010 project. Perhaps it is time to assess our progress and lack of progress on these indicators. I understand that Healthy People 2020 is due out this year - and we need to remember that it is not enough to just talk about how these issues are important. We need to actually DO THINGS that will help to improve the health of children and families.
Here were my thoughts on this subject five years ago. I am afraid that if this case in the news now is any indicator that we still have some work to do
Parents who have children with disabling conditions are at an increased risk for psychopathology as compared to parents with typically developing children (Fuller and Rankin, 1994). Parenting occupations are more complex and challenging when children have disabling conditions; increased demands on parents contribute to changes in normal parent-child interactions (Anastopoulos, Shelton, DuPaul, & Guevremont, 1993). In addition to the directly negative impact that stress causes to the parent, parental stress has been associated with increased child behavioral problems and intergenerational psychopathology, including depression (Baker, 1994; Ellenbogen & Hodgins, 2004).
Many child-centered and parent-centered factors may have a negative impact on development of normal parent-child interactions. Parent-centered factors include emotional and mental health needs that are unmet or poorly addressed by health professionals that can impact interactions. Although research shows that parents are not always able to follow through on professionals’ recommendations, it is known that they appreciate helpful suggestions for activities that promote child development or make caregiving easier (Humphrey & Case-Smith, 2001, p. 123). Shearn and Todd (1997) identified that there are long-term implications when a child has a disability because the parenting role is extended beyond typical expectations. They also state that the expectation of professionals contributes to levels of perceived stress, indicating that the parent’s needs are not being consistently met.
Several occupational therapy authors have also discussed the particular stresses upon parents whose children are disabled and the impact this has on the orchestration of their occupation (Esdaile, 1993; Primeau, 1998; Larson, 2000; Segal, 2000, Cronin, 2004). This literature has added significantly to occupational therapy’s understanding of parenting occupations through narrative analysis.
Relationship to Leading Health Indicators
According to Healthy People 2010 Leading Health Indicators (USDHS, 2002), mental health is defined as “a state of successful mental functioning, resulting in productive activities, fulfilling relationships, and the ability to adapt to change and cope with adversity. Mental health is indispensable to personal well-being, family and interpersonal relationships, and one’s contribution to society.” Mental health was chosen as a Leading Health Indicator because conditions such as major depression are the leading cause of disability among adults in developed nations such as the United States (USDHS, 2002).
Objective 18-9b of the LHI specifically targets the recognition and treatment of depression, which is reportedly the most unrecognized and untreated mental illness cited in the report. Depression is a leading cause of mental illness in women, affecting them at a frequency twice greater than men (Weissman & Klerman, 1992). Occupational therapists often interact with mothers as the primary caregivers to children, making awareness of maternal mental health issues particularly important for practice.
Developing wellness programs that facilitate parental mental health is critical in supporting the objectives of the Healthy People 2010 initiative. Little progress was made toward Healthy People 2000 objectives that focused on controlling stress and seeking treatment for depression (USDHS, 2002). The Centers for Disease Control and Prevention statistics (as cited in USDHS, 2002) indicate that there was a slight decline in the proportion of nurse practitioners who typically inquire about the parent-child relationship and a greater decline in the numbers of practitioners who ask about affective functioning in their adult patients at all. This indicates that an important need is present regarding parental mental health that is not being met.
The Healthy People 2010 report (USDHS, 2002) provides strong political contextual support for programs that facilitate parental mental health and prevention of illnesses including depression. The stresses of everyday life are a challenge to all parents and all children, and the fast-pace (tempo) of modern life has a negative impact on society’s collective ability to meaningfully interpret and experience normal occupations (Clark, 1997). This fact underscores the importance of addressing the mental health needs of parents whose children have disabilities. Killegrew (2000) identifies that broad ecocultural and contextual factors including perceived time availability, child-rearing strategies, and socioeconomic capital were more likely to dictate family routines than a child’s skills or abilities. Therefore there is substantial benefit to be gained by providing contextual interventions that promote and support parental mental health and wellness. Additionally, as parents of children who have disabilities have high levels of stress as measured on standardized instruments, parental stress management should be considered as an integral part of all occupational therapy programs for children who have disabilities (Esdaile & Greenwood, 2003).
One potential contextual obstacle to consider is that some research indicates that parents may be hesitant to discuss their stress and associated depression for fear of being reported to child welfare agencies (Heneghan, Mercer, & DeLeone, 2004). However, these researchers also indicate that this effect is partially mediated by a trusting relationship with the practitioner. Despite this, parents appreciated support that they did receive, even when it was only in the form of general written information and resources. These findings provide important contextual information to consider in developing an occupation-based program that supports parental mental health.
Existing programs and strategies
The principles behind the inclusion of parent education and support into an overall occupational therapy program was described by Cohn (2001), who discussed the benefits of waiting room experiences of parents while their children were receiving occupational therapy. Case-Smith & Nastro (1993) described dissatisfaction with occupational therapy when parental needs were not being met; they suggest that open communication and consistency are important factors to consider in promoting parental satisfaction. Despite professional calls for a focus on the occupation of parenting (Llewellyn, 1994), there is not much documentation in the occupational therapy literature regarding use of parenting skills as a therapeutic means. Hanna and Rodger (2002) reviewed the occupational therapy literature and identified that the available evidence regarding the efficacy of occupational therapy intervention for parent training and collaboration is limited. However, research completed outside of the occupational therapy profession supports the use of parent training programs for facilitating parental mental health, particularly in the short term and when the groups are offered to mothers (Barlow & Coren, 2003).
Relation to health promotion model
An ecological model as described by Gorin (1998, p.21) incorporates the interrelationships between parents and their environments that lead to stress and may threaten mental health. This type of model considers the environment from a systems perspective, including institutional, social, and cultural factors. Bronfenbenner (1977) suggests that development occurs within a context or ecology. The family’s microsystem, including the local community institutions such as school, religious institutions and peer groups, are all critical influences on health and well-being. The interaction of these various systems creates forums for development to occur, or not occur. These external factors may constitute significant barriers for parents of children who have disabilities; this makes the ecological model most appropriate to consider for any program proposal.
As an example, institutional factors could include local influences regarding availability of resources in a community and even the availability of professionals to provide services. Specifically, local municipalities all interpret IDEA in accordance with their own district policies and procedures. Navigating local special education systems can be highly frustrating to parents and the associated stressors related to obtaining appropriate services for a child who has a disability can be a drain on mental health.
OT centered wellness intervention
Based on the evidence presented herein, there is a strong need for specific attention to be offered to the mental health of parents when their children have disabilities. Generic support has always been a component of occupational therapy intervention in the form of verbal discussion regarding child progression in treatment, or to offer suggestions for a home program. It is now evident that parents need more directed efforts to support their mental wellness. Robust parent education initiatives for all families that receive services is needed.
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