Resources from AOTA
Consumer Tip Sheets: Caring for the Caregiver
This handout discusses how occupational therapy practitioners can assist parents and caregivers of children with a disability. It provides strategies to improve the quality of life for the family as well as the child with a disability.
Articles in OT Practice
Brachtesende, A. (March 22, 2004). Helping Caregivers Cope. OT Practice.
Articles in the American Journal of Occupational Therapy
Kadlec, M.B., Coster, W, Tickle-Degnen, L. & Beeghly, M. (2005). Qualities of caregiver-child interaction during daily activities in children born very low birthrate with and without white matter disorder. American Journal of Occupational Therapy, 59 (1), 57-66.
OBJECTIVE: The purpose of this study was to examine qualities of caregiver- child interactions during daily activities of healthy children born full-term and of children born prematurely and very low birth weight with and without white matter disorder.
METHOD: Three groups of 12 caregiver-child dyads, representing 3 levels of child biological risk, were matched on birth history, maternal education, ethnicity, and child gender. Ten expert clinicians used videotapes to rate behaviors of caregivers and their 30-month-old children engaging in dressing and snack activities. Correlations between ratings of 3 qualities were examined: caregiver directiveness, caregiver engagement, and child engagement. RESULTS: There were no significant differences between groups for the average caregiver and child ratings. However, correlations between caregiver directiveness and caregiver engagement ranged across the 3 groups from greatest to least biological risk (i.e., r = .63, .35, -.67, respectively). In the full-term group, correlations between the caregiver qualities of directiveness and engagement and child engagement were r = .62 and -.69, respectively. In contrast, the correlations between the caregiver and child qualities were small in the 2 very-low-birth-weight groups.
CONCLUSION: Results suggest patterns of caregiver interactions during daily activities may vary according to the child's level of biological risk. Caregivers of children with the greatest risk (i.e., white matter disorder) were both engaging and directive of their children during the activities, whereas caregivers of full- term children were less engaging when directive. The findings suggest that caregivers may be adjusting the level of their social and emotional assistance during caregiver-child interactions to the level of their children's abilities.
Articles Related to Children/Youth and Caregiving
1. Cloud, Jennifer M.; Parish, Susan L.Financial well-being of young children with disabilities and their families. Social Work: 01-JUL-06
2. Green, S. E. (2004, Aug.) Convergent Caregiving: Exploring the Social Experience of Eldercare in Families of Children with Disabilities Paper presented at the annual meeting of the American Sociological Association, San Francisco, CA, Retrieved 2006-10-05 from http://www.allacademic.com/meta/p109275_index.html.
“Primary among the emergent themes are: 1. Penalties of convergent care (limits on the support available for eldercare because of support previously received for parenting); 2. Effects of the child's disability on the attitudes of others toward maternal competence as a provider of eldercare; and 3. Empathy between children with disabilities and elders in need of care.”
3. Hauser-Cram, P., Erickson-Warfield, M. Shonkoff, J. and Krauss, M. (2000). Children with Disabilities: A Longitudinal Study of Child Development and Parent Well-being Journal of Family Nursing, Vol. 6, No. 2, 157-179 (2000) in Monogr Soc Res Child Dev. 2001;66(3):i-viii, 1-114; discussion 115-26.
4. Lefley, H. (1997). Synthesizing the family caregiving studies: Implications for service planning, social policy, and further research. Family Relations, 46, 4, 443-450.
6. Rogers, M. and Hogan, D. (2003). Family life with children with disabilities: The key role of rehabilitation. Journal of Marriage and Family, 65, 4, 818–833.
7. Yaoying Xu (2007). Empowering culturally diverse families of young children with disabilities: The Double ABCX Model. Early Childhood Education Journal, 34, 6, 431-7.
8. Murphy, N. A.; Christian, B.1; Caplin, D. A.2; Young, P. C. (2007). The health of caregivers for children with disabilities: caregiver perspectives. Child: Care, Health and Development, 33,2, 180-187(8).
Caregiver Assessment Tools
Feinberg, L.F. (2002) State of the Art: Caregiver Assessment in Practice Settings. Family Caregiver Alliance / National Center on Caregiving. Available at: Family Caregiver Alliance.
Reviews the Best Practice Criteria for Caregiver Assessment Tools, which should include the following domains:
- Caregiving Context
- Functional Level of Care Recipient
- Care Tasks and Skills
- Social Support
- Financial & Legal Considerations of Caregiving
- Coping Skills
- Confidence & Competence in Caregiving Role
- Values & Preferences
- Positive Aspects of Caregiving
Caregiver Strain Index
Caregiver Risk Screen (available in English and French)
C.A.R.E. Tool (Caregivers Aspirations, Realities and Expectations) – available in English & French
Caregiver Self Assessment Tool in English and Spanish (American Medical Association)
Multicultural Caregiver Resources
Family Caregiver Alliance: Fact Sheets on over 20 caregiving topics available in Spanish and Chinese.
The National Advisory Committee on Rural Health and Human Services: The 2006 Report to the Secretary: Rural Health and Human Services Issues (This document contains an excellent chapter on rural caregiving with recommendations.)
Fact Sheets on Grandparents Raising Grandchildren (with State Specific Resources)In English and Spanish
Lean on Me: Support and Minority Outreach for Grandparents Raising Grandchildren (AARP) - How best to provide grandparents who are raising their grandchildren with the information they need is explored in this report from AARP Knowledge Management and The Grandparent Information Center. Approaches considered include support groups and outreach to African American, Hispanic and Native American caregiving grandparents.
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