Latino Families with a Child with Prader-Willi Syndrome: Exploring Needs for Support

Journal of Social Work in Disability and Rehabilitation

Volumn 13, Issue 3, 2014, Pages 207-225

  Chaij, Carina ^a   Han, Meekyung ^b   Graziano, Lisa ^c  

^a San Andreas Regional Center   (United States)

^b SAN JOSE STATE UNIVERSITY   (United States)

^c Prader Willi California Foundation   (United States)

Author keywords

children; disability; empathy and support; ethnic minorities; individuals with disabilities; qualitative research; social work; social work and disability

Indexed keywords

ADAPTIVE BEHAVIOR; ADOLESCENT; ADULT; CHILD; CHILD BEHAVIOR; ETIOLOGY; FAMILY HEALTH; FEMALE; HISPANIC; HUMAN; INTERVIEW; MALE; MENTAL STRESS; MIDDLE AGED; NEEDS ASSESSMENT; PARENT; PRADER WILLI SYNDROME; PSYCHOLOGY; RELIGION; SIBLING; SOCIAL SUPPORT;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ADULT; CHILD; CHILD BEHAVIOR; FAMILY HEALTH; FEMALE; HISPANIC AMERICANS; HUMANS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; NEEDS ASSESSMENT; PARENTS; PRADER-WILLI SYNDROME; SIBLINGS; SOCIAL SUPPORT; SPIRITUALITY; STRESS, PSYCHOLOGICAL;

EID: 84905716977     PISSN: 1536710X     EISSN: 15367118     Source Type: Journal    
DOI: 10.1080/1536710X.2014.912184     Document Type: Article

References (26)

1. Allen, K. (2011). Managing Prader-Willi syndrome in families: An embodied exploration. Social Science and Medicine, 72, 460 - 468.
2. Bailey, D., Jr., Skinner, D., Correa, V., Arcia, E., Reyes-Blanes, M., Rodriguez, P. Skinner, M. (1999). Needs and supports reported by Latino families of young children with developmental disabilities. American Journal on Mental Retardation, 104, 437-451.
3. Cassidy, S., & Driscoll, D. (2009). Prader-Willi syndrome. European Journal of Human Genetics, 17 (3), 3 - 17.
4. Davis, K., & Gadivia-Payne, S. (2009). The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities. Journal of Intellectual and Developmental Disability, 34, 153 - 162.
5. Dodd, L. (2004). Supporting the siblings of young children with disabilities. British Journal of Special Education, 31 (1), 41 - 49.
6. Dykens, E., & Roof, E. (2008). Behavior in Prader-Willi syndrome: Relationship to genetic subtypes and age. Journal of Child Psychology and Psychiatry, 49, 1001.
7. Fuller, B., & Garcia Coll, C. (2010). Learning from Latinos: Contexts, families, and child development in motion. Developmental Psychology, 46, 559 - 565.
8. Giallo, R., & Gadivia-Payne, S. (2006). Child, parent, and family factors as predictors of adjustment for siblings of children with a disability. Journal of Intellectual Developmental Research, 50, 937 - 948.
9. Hodapp, R., Dykens, E., & Masino, L. (1997). Families of children with Prader-Willi syndrome: Stress-support and relations to child characteristics. Journal of Autism and Developmental Disorders, 27 (1), 11 - 24.
10. Holland, A., & Wong, J. (1999). Genetically determined obesity in Prader-Willi syndrome: The ethics and legality of treatment. Journal of Medical Ethics, 25, 230 - 236.
11. Hughes, M., Valle-Riestra, D., & Arguelles, M. (2008). The voices of Latino families raising children with special needs. Journal of Latinos and Education, 7, 241 - 257.
12. Hutchison, E. D. (2008). Dimensions of human behavior: Person and environment, (), 3rd ed. Thousand Oaks, CA: Sage.
13. Kassis, J., Boothroyd, P., & Ben-Dror, R. (1992). The family support group: Families and professionals in partnership. Psychosocial Rehabilitation Journal, 15 (4), 91 - 96.
14. Kundert, D. (2008). Prader-Willi syndrome. School Psychology Quarterly, 23, 246 - 257. doi: 10.1037/1045-3830.23.2.246
15. Lardieri, L., Blacher, J., & Swanson, H. (2000). Sibling relationships and parent stress in families of children with and without learning disabilities. Learning Disability Quarterly, 23 (2), 105 - 116.
16. Lobato, D., Kao, B., & Plante, W. (2005). Latino sibling knowledge and adjustment to chronic disability. Journal of Family Psychology, 19, 625 - 632.
17. Lowe-Greenlee, B. (2010). Prader-Willi syndrome: Parent perceptions of school, professional, social, and informational support, and relations between support, child behavior, and stress (Unpublished Doctoral dissertation). University of North Carolina at Chapel Hill, Chapel Hill, NC.
18. McCallion, P., Janicki, M., & Grant-Griffin, L. (1997). Exploring the impact of culture and acculturation on older families caregiving for persons with developmental disabilities. Family Relations, 46, 347 - 357.
19. O'Connor, D. (2002). Toward empowerment: Re-visioning family support groups. Social Work with Groups: A Journal of Community and Clinical Practice, 25(4), 37-56.
20. Prader-Willi California Foundation Homepage. (n.d.). Retrieved from http://www.pwcf.org/pages/ap.htm
21. Rae-Seebach, R. (2010). The impact of Prader-Willi syndrome on healthy siblings' perceptions of caregiving availability and psychosocial adjustment. Dissertation Abstracts International: Section B: The Sciences and Engineering, 71 (3-B).
22. Resch, J., Mireles, G., Benz, M., Grenwelge, C., Peterson, R., & Zhang, D. (2010). Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities. Rehabilitation Psychology, 55, 139 - 150.
23. Sinnema, M., Einfeld, S., Schraner-Stumpel, C., Maaskant, M., Boer, H., & Curfs, L. (2011). Behavioral phenotype in adults with Prader-Willi syndrome. Research in Developmental Disabilities: A Multidisciplinary Journal, 32, 604 - 612.
24. U.S. Bureau of the Census. (2004). Disability overview. Retrieved from http://www.census.gov/hhes/www/disability/overview.html
25. U.S. Bureau of the Census. (2010). Overview of race and Hispanics. Retrieved from http://www.census.gov/prod/cen2010/briefs/c2010br-02.pdf
26. Wigren, M., & Hansen, S. (2003). Prader-Willi syndrome: Clinical picture, psychosocial support and current management. Child: Care, Health and Development, 29, 449 - 456.