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Overview of the Concept of Caregiver Stress and Other Related Concepts Gaps Between Caregivers and OT Professionals Identifying Sources of Caregiver Stress in Aspergers Syndrome Context
Terminology Overview
Life = Configurations of everyday patterns of occupation meeting essential human needs (Matuska & Christiansen, 2008) Lifestyle balance = unique patterns of occupation enable needs essential to resilience, well-being, and quality of life are wellmet (Matuska & Christiansen, 2008)
Finding Support/Solutions
Parenting is a 24/7/365 occupation. 24/7/365 OT sessions for their child only represents a small percentage their overall life. The initial poster is usually desperate for answersanswers- feelings included anxiety, selfselfblame, grief, and acknowledgement (Klein et. acknowledgement Al, 2011)
Offering Support/Solutions
Everyone treats each other as family, especially in advices goes. They understand that some of the processes can be overwhelming for parents who are new to the diagnosis. Potential therapeutic benefits
Rants
Typically they are things that are left unsaid in OT settings If they are said, you have to reflect on the comments and see if you have done your job. Support groups (particularly ones on the Internet) has become a commonplace for these rants.
Hands On Activity
Hands on the Activity- 5 minutes ActivityBrainstorm potential sources of caregiver stress.
Explanation of Factors
Parental stress is positively correlated with emotionalemotional-focused strategies and poorer quality of life. Perception of experiences as a threat have a positive correlation with poor ability to adapt. Parents perceiving their experiences as a challenge has a better relationship with their child and greater self-fulfillment. self-
Explanation of Factors
Parental feelings of ineffectiveness in parenting, lack of feelings for responsibility for child childs behavior, and perception of their childs child needs dominating their lives are associated with the increased reports of stress. Parents who have external loci of control and blame themselves for the problem tend to feel they have less control of their lives and their child.
Explanation of Factors
Parents feel a higher level of coherence are associated with seeking social support and selfself-controlling coping Parents who reported more guilty feelings ad who felt having poor control over their childs child development have less available social support.
Explanation of Factors
Parents who employ emotion focused strategies are more stressed, feel more disturbed in more areas of their lives, have decreased well-being, tend to experience more wellguilt and false beliefs of autism. (Cappe et. Al, in press)
OT Settings Limitations
Rigid specialization tend to cause gaps in service delivery, miscommunication, and limited attention to gray areas (Lawlor & areas Mattingly, 1998)
E.g. School-based OT settings School-
Hands on Activity #2
Identify possible solutions to help parents of Aspies. For each solution, please ALSO list AT LEAST1 pro and 1 con of each LEAST1 solution.(Practice areas of focusfocusPediatrics and Mental Health/Health and Wellness)Wellness)- 5 minutes
References
Bendixen, R. M., Elder, J. H., Donaldson, S., Kairalla, J. A., Valcante, G., & Ferdig, R. E.(2011). Effects of father-based in-home intervention on perceived stress and family dynamics in parents of children with autism. American Journal of Occupational Therapy, 65(6), 679-685. Benson, P. R., & Karlof, K. L. (2009). Anger, stress proliferation, and depressed mood among parents of children with asd: A longitudinal replication. journal of autism and developmental disorders, 39, 350-360. Bhatia Seth, S. (2011). Autism: the impact on caregivers. Journal of psychosocial research, 6(1), 149-155. Bourke-Taylor, H., Howie, L., & Law, M. (2010). Impact of caring for a school-aged child with a disability: Understanding mothers' perspectives. Australian occupational therapy journal, 57, 127-134.
References
Boyd, B. A. (2002). Examining the relationship between stress and lack of social support in mothers of children with autism. Focus on autism and other developmental disabilities, 17(4), 208-214. Cappe, E., Wolff, M., Bobet, R., & Adrien, J. L. (2011). Quality of life: a key variable to consider in the evaluation of adjustment in parents of children with autism spectrum disorders and in the development of relevant support and assistance programmes. Quality of life research, 20, 12791291. Caronna, E. B., Augustyn, M., & Zuckerman, B. (2007). Revisiting parental concerns in the age of autism spectrum disorders: The need to help parents in the face of uncertainty. Archives of Pediatrics & Adolescent Medicine, 161(4), 406-408.
References
Cohn, E. S. (2001). From waiting to relating: parents' experience in the waiting room of an occupational therapy clinic. American Journal of Occupational Therapy, 55(2), 167-173. Cuskelly, M., Pulman, L., & Hayes, A. (1998). Parenting and employment decisions of parents with a preschool child with a disability. Journal of intellectual disability research, 23(4), 319-331. Dunn, M. E., Burbine, T., Bowers, C. A., & Tantleff-Dunn, S. (2001). Moderators of stress in parents of children with autism. Community mental health journal, 37(1), 39-50. Factor, D. C., Perry, A., & Freeman, N. (1990). Brief report: stress, social support, and respite care use in families with autistic children. journal of autism and developmental disorders, 20, 139-145.
References
Green, S. E. (2007). "we're tired, not sad": Benefits and burdens of mothering a child with a disability. Social science & medicine, 64, 150161. Hare, D. J., Pratt, C., Burton, M., Bromley, J., & Emerson, E. (2004). The health and social care needs of family carers supporting adults with autistic spectrum disorders. Autism, 8(4), 425-442. Harrington, J. W., Patrick, P. A., Edwards, K. S., & Brand, D. A. (2006). Parenting beliefs about autism: Implications for the treating physician. Autism, 10, 452-460. Hines, M., Balandin, S., & Togher, L. (in press). Buried by autism: Older parents perception of autism. Autism.
References
Hoffman, C. D., Sweeney, D. P., Lopez-Wagner, M. C., Hodge, D., Nam, C. Y., & Botts, B.H. (2008). Children with autism: Sleep problems and mothers' stress. Focus on autism and other developmental disabilities, 23(3), 155163. Honey, E., Hastings, R. P., & McConachie, H. (2005). Use of the questionnaire on resources and stress (qrs-f) with parents of young children with autism. Autism, 9(3), 246-253. Hurlbutt, K. S. (2011). Experiences of parents who homeschool their children with autism spectrum disorders. Focus on autism and other developmental disabilities, 26(4), 239-249.
References
Johnson, N., Frenn, M., Feetham, S., & Simpson, P. (2011). Autism spectrum disorder: parenting stress, family functioning and health-related quality of life. Families, services & health, 29(2), 232-249. Klein, S., Wynn, K., Ray, L., Demeriez, L., LaBerge, P., Pei, J., & St. Pierre, C. (2011). Information sharing during diagnostic assessments: What is relevant for parents? Physical & occupational therapy in pediatrics, 31(2), 120-130. Lawlor, M. C., & Mattingly, C. F. (1998). The complexities embedded in family centered care. American Journal of Occupational Therapy, 52(4), 259-266. Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. Journal of intellectual disability research, 50(3), 172-182.
References
Little, L. (2002). Differences in stress and coping for mothers and fathers of children with asperger's syndrome and nonverbal learning disorders. Pediatrics nursing, 28(6), 565-569. Mailick Seltzer, M., Greenberg, J. S., Floyd, F. J., Pettee, Y., & Hong, J. K. (2001). Life course impacts of parenting a child with a disability. American journal on mental retardation, 106(3), 265-283. Mankey, T. A. (2011). Occupational therapists beliefs and involvement with secondary transition planning. Physical & occupational therapy in pediatrics, 31(4), 345-357. Matuska, K. M., & Christiansen, C. H. (2008). A proposed model of lifestyle balance. Journal of occupational science, 15(1), 9-16.
References
Miller Kuhaneck, H., Burroughs, T., Wright, J., Lemanczyk, T., & Rowntree Darragh, A. (2010). A qualitative study of coping mechanism in mothers of children with an autism spectrum disorder. Physical & occupational therapy in pediatrics, 30(4), 340-349. Phetrasuwan, S., & Miles, M. S. (2009). Parenting stress in mothers of children with autism spectrum disorders. Journal of specialists in pediatrics nursing, 14(3), 157-163. Preece, D., & Jordan, R. (2007). Short breaks services for children with autism spectrum disorders: Factors associated with service use and nonuse. Journal of autism and developmental disorders, 37, 374-384.
References
Pruchno, R. A., & Meeks, S. (2004). Health-related stress, affect, and depressive symptoms experienced by caregiving mothers of adults with a developmental disability. Psychology and aging, 19(3), 394-401. Richmond Mancil, G., & Boyd, B. A. (2009). Parenting stress and autism: are there useful coping strategies. Education and training in developmental disabilities, 44(4), 523-535. Rodger, S., Ashburner, J., Cartmill, L., & Bourke-Taylor, H. (2010). Helping children with autism spectrum disorders and their families: Are we losing our occupation-centered focus. Australian occupational therapy journal, 57, 276-279.
References
Shields Bagby, M., Dickie, V. A., & Baranek, G. T. (2012). How sensory experiences of children with and without autism affect family occupations. American Journal of Occupational Therapy, 66(1), 78-85. Stein, L. I., Foran, A. C., & Cermak, S. (2011). Occupational patterns of children with autism spectrum disorder: revisiting matuska and christiansens model of lifestyle balance. Journal of occupational science, 18(2), 115-126. Taylor, J. L. & Warren, Z. E. (in press). Maternal depressive symptoms following autism spectrum diagnosis. Journal of autism and developmental disorders.
References
Trapaguier, C. (1999). Families with autism. Infants and young children, 12(2), 37-46. Wang, P., Michaels, C. A., & Day, M. S. (2011). Stresses and coping strategies of chinese families with children with autism and other developmental disabilities. journal of autism and developmental disorders, 41, 783-793. Werner DeGrace, B. (2004). The everyday occupation of families with children with autism. American Journal of Occupational Therapy, 58(5), 543-549. Woods, J. J., & Lindeman, D. P. (2008). Gathering and giving information with families. Infants & Young Children, 21(4), 273-283.