EDITOR I A L
Perspectives on Family-Centered Intervention
esearch has confirmed that parents of children with disabilities have greater parental stress and burden than parents of children without disabilities (Allik, Larsson, & Smedge, 2006; Larson, 2006). The level of parental stress appears to be related to characteristics of the child, particularly the extent of behavioral problems. The challenges of parenting a child with autism spectrum disorder (ASD) can be particularly burdensome, and stress related to parenting a child with ASD can affect the parents’ physical and mental health. The behaviors associated with ASD (e.g., poor communication skills and increased ritualistic and stereotypic behaviors) affect the family’s daily function and can limit their participation in community activities (Schaaf, Toth-Cohen, Johnson, Outten, & Benevides, 2011). Mealtimes can be stressful or chaotic when children with ASD insist on eating only certain foods or have a temper tantrum when their meal time routine changes. Transitions between activities or breaks in the routine may be difficult for certain children, causing stress during the day’s necessary transitions. Mothers with children with ASD report feeling isolated (Larson, 2006) and a significant portion of mothers are depressed (Allik et al., 2006). In a qualitative study using interviewing of parents with ASD, Schaaf et al. (2011) found that the child with ASD frequently controlled the family’s routine and the child’s sensory-related behaviors limited the family’s participation in community activities. For example, families avoided environments with high auditory or tactile input or curtailed activities when the child exhibited extreme sensory seeking behaviors. Researchers in this issue used quantitative methods to examine the effects of children with ASD on caregivers’ health-related quality of life (Rizk, Pizur-Barnekow, & Darragh, 2011) and the effects of children with sensory processing disorder (SPD) on caregiver’s sense of parenting efficacy and satisfaction (Cohn, May-Benson, & Teasdale, 2011). These studies explored the complexity of influences on parent–child relationships, identifying specific vari-
ables that can mediate the parents’ ability to establish healthy and efficacious patterns of family adaptation. In a sample of 33 parents of children with ASD, Rizk et al. found that the mothers, aged 35 to 44 years, had lower mental health-related quality of life when compared to the norm-based group. Few pediatric occupational therapists who serve children with ASD assess parents’ mental health, yet caregiver health inevitably affects the child and should be a priority in family-centered interventions. Occupational therapy strategies that can improve parents’ mental health include suggesting adaptations to family routines that can improve the quality of family activities, giving parents strategies for managing behaviors, recommending respite and resources that allow parents time to regroup, and linking parents to support groups or to other parents in similar situations (Rizk et al., 2011; Schaaf et al., 2011). Rizk et al. posed a hypothesis that mothers who participated in more hobbies and community activities would have higher health-related quality of life. This hypothesis was not supported and, in fact, a greater proportion of hobbies and community activities was associated with poorer physical health. This finding suggests that more activities can be related to more stress and may be perceived as additional burden. When mothers struggle to cope with the daily life of a child with ASD, even activities that should be rejuvenating can in reality be burdensome. Support groups and linking parents to networks of other parents may or may not benefit families, depending on their priorities at the moment. The balance of social and leisure activities with parenting activities may vary across mothers and across time. Cohn et al. examined parents’ sense of competence when parenting a child with SPD. Parenting competence (satisfaction and efficacy) interacts with children’s behaviors (i.e., parents feel more competent when children’s behaviors are positive) and parents who feel efficacious and competent are more likely to have positive child outcomes. Cohn et al. investigated the relationship between parents’ sense of Copyright © American Occupational Therapy Foundation
Downloaded from otj.sagepub.com at FLORIDA INSTITUTE OF TECHNOLO on March 19, 2015
E D I T O R I A L
competence and specific sensory-related behaviors in the child and found moderate correlations. In particular, they found that children with over-responsive and under-responsive behaviors can predict levels of parent satisfaction. In general, this sample of parents were low in satisfaction with their parenting role. Cohn et al. speculated that parents of children who are under-responsive may need to expend additional efforts to elicit their child’s response or to manage undesirable behaviors. Both studies give us insight into the complexity of parenting a child with ASD or SPD; they also describe findings about parenting that were unexpected and suggest that uniform notions of familycentered interventions are not warranted. Both draw attention to the role of occupational therapists in supporting family adaptation and resiliency. These studies contribute to our knowledge of parenting children with ASD and SPD and identify the need for more research on occupational therapy interventions that enhance caregiving roles when parenting a child with ASD and SPD.
References Allik, H., Larsson, J. O. & Smedge, H. (2006). Health related quality of life in parents of school-age children with Asperger syndrome or high functioning autism. Health and Quality of Life Outcomes, 4, 1. Retrieved July 10, 2011, from www.hqlo. com/content/4/1/1 Cohn, E., May-Benson, T. A., Teasdale, A. (2011). The relationship between behaviors associated with sensory processing and parental sense of competence. OTJR: Occupation, Participation and Health, 31, 172-181. Larson, E. (2006). Caregiving and autism: How does children’s propensity of routinization influence participation in family activities? The Occupational Therapy Journal of Research, 26, 69-79. Rizk, S., Pizur-Barnekow, K., & Darragh, A. R. (2011). Leisure and social participation and health-related quality of life in caregivers of children with autism. OTJR: Occupation, Participation and Health, 31, 164-171. Schaaf, R. C., Toth-Cohen, S., Johnson, S. I., Outten, G., & Benevides, T. W. (2011). The everyday routines of families of children with autism: Examining the impact of sensory processing difficulties on the family. Autism, 15, 373-398.
Jane Case-Smith, EdD, OTR/L, FAOTA Editor doi: 10.3928/15394492-20110713-01
OTJR: Occupation, Participation and Health • Vol. 31, No. 4, 2011 Downloaded from otj.sagepub.com at FLORIDA INSTITUTE OF TECHNOLO on March 19, 2015