Abstract
An explosion of research on families and developmental disabilities occurred during the last two decades of the 20th century and is continuing into the 21st century. The Mental Retardation/Developmental Disabilities Branch of the National Institute of Child Health and Human Development sponsored conferences, workshops, and requests for applications on many aspects of family adjustment. The American Association on Mental Retardation published a special collection of journal articles (Blacher & Baker, 2002) and special issues of the American Journal on Mental Retardation (1989) and the Journal of Intellectual Disability Research (2003) were devoted to the topic. Driven by the greater likelihood that persons with developmental disabilities (DD) would live longer and with their families, the need for understanding the influence of the family assumed a high priority. This influence was seen as transactional, with attention directed both to understanding the effect of a person with DD on the family, as well as the effect of the family on persons with DD.
Access provided by Autonomous University of Puebla. Download to read the full chapter text
Chapter PDF
Similar content being viewed by others
Keywords
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.
REFERENCES
Note: Articles included in the Recent Research Sample are marked with an asterisk. Abidin, R. R. (1982). Parenting Stress Index manual. Charlottesville, VA: Pediatric Psychology Press.
Amato, P. R., Johnson, D. R., Booth, A., & Rogers, S. J. (2003). Continuity and change in marital quality between 1980 and 2000. Journal of Marriage and the Family, 65, 1–22.
Antonovsky, A. (1993). The implications of salutogenesis: An outsider’s view. In A. P. Turnbull, J. M. Patterson, S. K. Behr, D. L. Murphy, J. G. Marquis, & M. J. Blue-Banning (Eds.), Cognitive coping, families, and disability (pp. 111–122). Baltimore, MD: Paul H. Brookes.
Antonovsky, A., & Sourani, T. (1988). Family sense of coherence and family adaptation. Journal of Marriage and the Family, 50, 79–92.
Bailey, D. B., Jr., Blasco, P. M., & Simeonsson, R. J. (1992). Needs expressed by mothers and fathers of young children with disabilities. American Journal on Mental Retardation, 97, 1–10.
Bailey, D. B., Jr., Skinner, D., Correa, V., Arcia, E., Reyes-Blanes, M. E., Rodriguez, P., et al. (1999). Needs and supports reported by Latino families of young children with developmental disabilities. American Journal on Mental Retardation, 104, 437–451.
Baker, B. L., & Blacher, J. (2002). For better or worse? Impact of residential placement on families. Mental Retardation, 40, 1–13.
Baker, B. L., McIntyre, L. L., Blacher, J., Crnic, K., Edelbrock, C., & Low, C. (2003). Pre-school children with and without developmental delay: Behavior problems and parenting stress over time. Journal of Intellectual Disability Research, 47, 217–230.
Beck, A. T., Ward, C. H., Mendelson, M., & Erbaugh, J. (1961). An inventory for measuring depression. Archives of General Psychiatry, 4, 561–571.
Beckman, P. J. (1991). Comparison of mothers’ and fathers’ perceptions of the effect of young children with and without disabilities. American Journal on Mental Retardation, 95, 585–595.
Bigby, C. (1997). Parental substitutes? The role of siblings in the lives of older people with intellectual disability. Journal of Gerontological Social Work, 29(1), 3–21.
Blacher, J., & Baker, B. L. (2002). The best of AAMR: Families and mental retardation: A collection of notable AAMR journal articles across the 20th century. Washington, DC: American Association on Mental Retardation.
Blacher, J., Baker, B. L., & Feinfield, K. A. (1999). Leaving or launching? Continuing family involvement with children and adolescents in placement. American Journal on Mental Retardation, 104, 452–465.
Blacher, J., Lopez, S., Shapiro, J., & Fusco, J. (1997). Contributions to depression in Latina mothers with and without children with retardation. Family Relations: Interdisciplinary Journal of Applied Family Studies, 46, 325–334.
Bloom, B. L., & Naar, S. (1994). Self-report measures of family functioning: Extensions of a factorial analysis. Family Process, 33, 203–216.
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, 208–215.
Bray, J. H. (1995). Family assessment: Current issues in evaluating families. Family Relations, 44, 469–478.
*Bruns, D. A. (2000). Leaving home at an early age: Parents’ decisions about out-of-home placement for young children with complex medical needs. Mental Retardation, 38, 50–60.
Burack, A., Hodapp, R. M., & Zigler, E. (1998). Handbook of mental retardation and development. New York: Cambridge University Press.
Burnette, D. (2000). Latino grandparents rearing grandchildren with special needs: Effects on depressive symptomatology. Journal of Gerontological Social Work, 33(3), 1–16.
Cahill, B. M., & Glidden, L. M. (1996). Influence of child diagnosis on family and parental functioning: Down syndrome versus other disabilities. American Journal on Mental Retardation, 101, 149–160.
Casper, L. M., & Bianchi, S. M. (2002). Continuity and change in the American family. Thousand Oaks: Sage Publications.
*Chen, S., Ryan-Henry, S., Heller, T., & Chen, E. H. (2001). Health status of mothers of adults with intellectual disability. Journal of Intellectual Disability Research, 45, 439–449.
*Chen, T. Y., & Tang, C. S. (1997). Stress appraisal and social support of Chinese mothers of adult children with mental retardation. American Journal on Mental Retardation, 101, 473–482.
Cherlin, A. J. (1992). Marriage, divorce, remarriage (Rev. ed.). Cambridge, Massachusetts: Harvard University Press.
Cohen, S., & Willis, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological Bulletin, 98, 310–357.
Coleman, M., Ganong, L., & Fine, M. (2000). Reinventing remarriage: Another decade of progress. Journal of Marriage and the Family, 62, 1238–1307.
Corman, H., & Kaestner, R. (1992). The effects of child health on marital status and family structure. Demography, 29, 389–408.
Costa, P. T., & McCrae, R. R. (1992). Revised Personality Inventory (NEO PI-R) and NEO Five-Factor Inventory (NEO-FFI): Professional manual. Odessa, FL: Psychological Assessment Resources.
Costigan, C. L., & Cox, M. J. (2001). Fathers’ participation in family research: Is there a self-selection bias? Journal of Family Psychology, 15, 706–720.
Costigan, C. L., Floyd, F. J., Harter, K. S. M., & McClintock, J. C. (1997). Family process and adaptation to children with mental retardation: Disruption and resilience in family problem-solving interactions. Journal of Family Psychology, 11, 515–529.
Coyne, J. C., & Racioppo, M. W. (2000). Never the twain shall meet: Closing the gap between coping research and clinical intervention research. American Psychologist, 55, 655–664.
Craddock, A. E. (2001). Family system and family functioning: Circumplex model and FACES IV. Journal of Family Studies, 7, 29–39.
Crowley, S. L., & Taylor, M. J. (1994). Mothers’ and fathers’ perceptions of family functioning in families having children with disabilities. Early Education and Development, 5, 213–225.
Cuskelly, M., & Gunn, P. (1993). Maternal reports of behavior of siblings of children with Down syndrome. American Journal on Mental Retardation, 97, 521–529.
Cutrona, C. E., & Suhr, J. A. (1992). Controllability of stressful events and satisfaction with spouse support behaviors. Communication Research, 19, 154–174.
Dakof, G. A. (1996). Meaning and measurement of family: Comment on Gorman-Smith et al. (1996). Journal of Family Psychology, 10, 142–146.
DeFrain, J., & Olson, D. H. (1999). Contemporary family patterns and relationships. In M. Sussman, S. K. Steinmetz & G. W. Peterson (Eds.), Handbook of marriage and the family (2nd ed., pp. 309–326). New York: Plenum Press.
Diener, E. (2000). Subjective well-being: The science of happiness and a proposal for a national index. American Psychologist, 55, 34–44.
Dunst, C. J., Trivette, C. M., & Cross, A. H. (1984). Family support scale: Reliability and validity. Journal of Individual, Family and Community Wellness, I(4), 45–52.
Dykens, E. M. (1999). Direct effects of genetic mental retardation syndrome: Maladaptive behavior and psychopathology. In L. M. Glidden (Ed.), International review of research in mental retardation (pp. 1–26). San Diego: Academic Press.
*Dyson, L. (1997). Fathers and mothers of school-age children with developmental disabilities: Parental stress, family functioning, and social support. American Journal on Mental Retardation, 102, 267–279.
Dyson, L., Edgar, E., & Crnic, K. (1989). Psychological predictors of adjustment by siblings of developmentally disabled children. American Journal on Mental Retardation, 94, 292–302.
Egan, J., & Walsh, P. N. (2001). Sources of stress among adult siblings of Irish people with intellectual disability. Irish Journal of Psychology, 22(1), 28–38.
Emerson, E. (2003). Mothers of children and adolescents with intellectual disability: Social and economic situation, mental health status, and the self-assessed social and psychological impact of the child’s difficulties. Journal of Intellectual Disability Research, 47, 385–399.
Farber, B. (1959). Effects of a severely mentally retarded child on family integration. Society for the Research in Child Development Monographs, 24(2), 1–112.
Farber, B., & Jenné, W. C. (1963). Family organization and parent-child communication: Parents and siblings of a retarded child. Monographs of the Society for Research in Child Development, 28(7), 1–78.
Fisman, S., Wolf, L., Ellison, D., & Freeman, T. (2000). A longitudinal study of siblings of children with chronic disabilities. Canadian Journal of Psychiatry, 45, 369–377.
Flaherty, E. M., & Glidden, L. M. (2000). Positive adjustment in parents rearing children with Down syndrome. Early Education and Development, 11, 407–422.
Floyd, F. J., Costigan, C. L., & Phillippe, K. A. (1997). Developmental change and consistency in parental interactions with school-age children who have mental retardation. American Journal on Mental Retardation, 101, 579–594.
Floyd, F. J., & Gallagher, E. M. (1997). Parental stress, care demands, and use of support services for school-age children with disabilities and behavior problems. Family Relations, 46, 359–371.
Floyd, F. J., & Phillippe, K. A. (1993). Parental interactions with children with and without mental retardation: Behavior management, coerciveness, and positive exchange. American Journal on Mental Retardation, 97, 673–684.
Flynt, S. W., & Wood, T. A. (1989). Stress and coping of mothers of children with moderate mental retardation. American Journal on Mental Retardation, 94, 278–283.
Folkman, S., & Mokowitz, J. T. (2000). Positive affect and the other side of coping. American Psychologist, 55, 647–654.
Force, L. T., Botsford, A., Pisano, P. A., & Holbert, A. (2000). Grandparents raising children with and without a developmental disability: Preliminary comparisons. Journal of Gerontological Social Work, 33(4), 5–21.
Friedrich, W. N., & Friedrich, W. L. (1981). Psychosocial assets of parents of handicapped and non-handicapped children. American Journal of Mental Deficiency, 85, 551–553.
Gath, A. (1977). The impact of an abnormal child upon the parents. British Journal of Psychiatry, 130, 405–410.
Gibson, C. H. (1995). The process of empowerment in mothers of chronically ill children. Journal of Advanced Nursing, 21, 1201–1210.
Glidden, L. M. (1993). What we do not know about families with children who have developmental disabilities: Questionnaire on resources and stress as a case study. American Journal on Mental Retardation, 97, 481–495.
Glidden, L. M., & Cahill, B. M. (1998). Successful adoption of children with Down syndrome and other developmental disabilities. Adoption Quarterly, 1(3), 27–43.
Glidden, L. M., & Floyd, F. J. (1997). Disaggregating parental depression and family stress in assessing families of children with developmental disabilities: A multi sample analysis. American Journal on Mental Retardation, 102, 250–266.
Goldberg, S., Marcovitch, S., MacGregor, D., & Lojkasek, M. (1986). Family responses to developmentally delayed preschoolers: Etiology and the father’s role. American Journal of Mental Deficiency, 90, 610–617.
Glidden, L. M., Rogers-Dulan, J., & Hill, A. E. (1999). “The child that was meant?” or “Punishment for sin?”: Religion, ethnicity, and families with children with disabilities. In L. M. Glidden (Ed.), International review of research in mental retardation (pp. 267–288). San Diego, CA: Academic Press.
Glidden, L. M., & Schoolcraft, S. A. (2003). Depression: Its trajectory and correlates in mothers rearing children with intellectual disability. Journal of Intellectual Disability Research, 47, 250–263.
Gottlieb, A. (1998). Single mothers of children with multiple disabilities: The role of sense of coherence in managing multiple challenges. In H. I. McCubbin, E. A. Thompson, A. I. Thompson, & J. E. Fromer (Eds.), Stress, coping, and health in families (pp. 189–204). London: Sage Publications.
Gowen, J. W., Johnson-Martin, N., Goldman, B. D., & Appelbaum, M. (1989). Feelings of depression and parenting competence of mothers of handicapped and nonhandicapped infants: A longitudinal study. American Journal on Mental Retardation, 94, 259–271.
Grant, G., Ramcharan, P., & Goward, P. (2003). Resilience, family care, and people with intellectual disabilities. In L. M. Glidden (Ed.), International review of research in mental retardation (Vol. 26, pp. 135–173). Amsterdam: Academic Press.
Grant, G., Ramcharan, P., McGrath, M., Nolan, M., & Keady, J. (1998). Rewards and gratifications among family caregivers: Towards a refined model of caring and coping. Journal of Intellectual Disability Research, 42, 58–71.
Guralnick, M. J. (1997). Peer social networks of young boys with developmental delays. American Journal on Mental Retardation, 101, 595–612.
Guralnick, M. J., Neville, B., Connor, R. T., & Hammond, M. A. (2003). Family factors associated with the peer social competence of young children with mild delays. American Journal on Mental Retardation, 108, 272–287.
Gutman, L. M., Sameroff, A. J., & Cole, R. (2003). Academic growth curve trajectories from 1st grade to 12th grade: Effects of multiple social risk factors and preschool child factors. Developmental Psychology, 39, 777–790.
Hahlweg, K., Kaiser, A., Christensen, A., Fehm-Wolfsdorf, G., & Groth, T. (2000). Self-report and observational assessment of couples’ conflict: The concordance between the Communication Patterns Questionnaire and the KPI observation system. Journal of Marriage and the Family, 62, 61–67.
Hallahan, D. P., & Kauffman, J. M. (2003). Exceptional learners: An introduction to special education (9th ed.). Boston: Allyn and Bacon.
Hampson, R. B., Beavers, W. R., & Hulgus, Y. (1990). Cross-ethnic family differences: Interactional assessment of White, Black, and Mexican-American families. Journal of Marital and Family Therapy, 16, 307–319.
Hampson, R. B., Hulgus, Y. F., Beavers, W. R., & Beavers, J. S. (1988). The assessment of competence in families with a retarded child. Journal of Family Psychology, 2, 32–53.
Hannah, M. E., & Midlarsky, E. (1999). Competence and adjustment of siblings of children with mental retardation. American Journal on Mental Retardation, 104, 22–37.
Harris, S. L., Alessandri, M., & Gill, M. J. (1991). Training parents of developmentally disabled children. In J. L. Matson & J. A. Mulick (Eds.), Handbook of mental retardation (pp. 373–396). New York: Pergamon Press.
Harris, V. S., & McHale, S. M. (1989). Family life problems, daily care giving activities, and the psychological well-being of mothers of mentally retarded children. American Journal on Mental Retardation, 94, 231–239.
Hassiotis, A. (1997). Parents of young persons with learning disability: An application of the family adaptability and cohesion scale (FACES III). The British Journal of Developmental Disabilities, 84, 36–42.
Hastings, R. P. (1997). Grandparents of children with disabilities: A review. International Journal of Disability, Development and Education, 44, 329–340.
Hastings, R. P. (2003). Child behavior problems and partner mental health as correlates of stress in mothers and fathers of children with autism. Journal of Intellectual Disability Research, 47, 231–237.
*Hastings, R. P., & Brown, T. (2002). Behavior problems of children with autism, parental self-efficacy, and mental health. American Journal on Mental Retardation 107, 222–232.
Hastings, R. P., & Taunt, H. M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation, 107, 116–127.
Hayden, L. C., Schiller, M., Dickstein, S., Seifer, R., Sameroff, S., Miller, I., et al. (1998). Levels of family assessment: I. Family, marital, and parent–child interaction. Journal of Family Psychology, 12, 7–22.
Helff, C., & Glidden, L. M. (1998). More positive or less negative? Trends in research on adjustment of families rearing children. Mental Retardation, 36, 457–465.
Heller, T., Miller, A., & Factor, A. (1997). Adults with mental retardation as supports to their parents: Effects on parental care giving appraisal. Mental Retardation, 35, 338–346.
Henderson, S. H., Hetherington, E. M., Mekos, D., & Reiss, D. (1996). Stress, parenting, and adolescent psychopathology in non-divorced and stepfamilies: A within-family perspective. In E. M. Hetherington & E. A. Blechman (Eds.), Stress, coping, and resiliency in children and families (pp. 373–396). Mahwah, New Jersey: Lawrence Erlbaum Associates.
Herman, S. E., & Marcenko, M. O. (1997). Perceptions of services and resources as mediators of depression among parents of children with developmental disabilities. Mental Retardation, 35, 458–467.
Hetherington, E. M., & Stanley-Hagan, M. (2002). Parenting in divorced and remarried families. In M. H. Bornstein (Ed.), Handbook of parenting: Vol. 3. Being and becoming a parent (2nd ed., pp. 287–315). Mahwah, New Jersey: Lawrence Erlbaum Associates.
*Hoare, P., Harris, M., Jackson, P., & Kerley, S. (1998). A community survey of children with severe intellectual disability and their families: Psychological adjustment, carer distress and the effect of respite care. Journal of Intellectual Disability Research, 42, 228–237.
Hodapp, R. M. (1995). Parenting children with Down syndrome and other types of mental retardation. In M. H. Bornstein (Ed.), Handbook of parenting (pp. 233–253). Mahwah, New Jersey: Lawrence Erlbaum Associates.
Hodapp, R. M. (1999). Indirect effects of genetic mental retardation disorders: Theoretical and methodological issues. In L. M. Glidden (Ed.), International review of research in mental retardation (Vol. 22, pp. 27–50). San Diego: Academic Press.
Hodapp, R. M., Fidler, D. J., & Smith, A. (1998). Stress and coping in families of children with Smith–Magenis syndrome. Journal of Intellectual Disability Research, 42, 331–340.
Hodapp, R. M., Wijma, C. A., & Masino, L. L. (1997). Families of children with 5p- (cri du chat) syndrome: Familial stress and sibling reactions. Developmental Medicine and Child Neurology, 39, 757–761.
Holroyd, J. (1987). Questionnaire on resources and stress for families with chronically ill or handicapped members. Brandon, VT: Clinical Psychological Publishing Co.
Holroyd, J., & McArthur, D. (1976). Mental retardation and stress on the parents: A contrast between Down’s syndrome and childhood autism. American Journal of Mental Deficiency, 80, 431–436.
Honig, A. S., & Winger, C. J. (1997). A professional support program for families of handicapped preschoolers: Decrease in maternal stress. The Journal of Primary Prevention, 17, 285–296.
Horton, T. V., & Wallander, J. L. (2001). Hope and social support as resilience factors against psychological distress of mothers who care for children with chronic physical conditions. Rehabilitation Psychology, 46, 382–399.
Hudson, A. M., Matthews, J. M., & Gavidia-Payne, S. T. (2003). Evaluation of an intervention system for parents of children with intellectual disability and challenging behavior. Journal of Intellectual Disability Research, 47, 238–249.
Jacob, T., & Windle, M. (1999). Family assessment: Instrument dimensionality and correspondence across family reporters. Journal of Family Psychology, 13, 339–354.
Janicki, M. P., McCallion, P., Grant-Griffin, L., & Kolomer, S. R. (2000). Grandparent caregivers I: Characteristics of the grandparents and the children with disabilities for whom they care. Journal of Gerontological Social Work, 33(3), 35–55.
Joesch, J. M., & Smtih, K. R. (1997). Children’s health and their mothers’ risk of divorce or separation. Social Biology, 44, 159–169.
Kelley, S. J., & Whitley, D. M. (2003). Psychological distress and physical health in grandparents raising grandchildren: Development of an empirically based intervention model. In B. Hayslip, Jr. & J. H. Patrick (Eds.), Working with custodial grandparents (pp. 127–144). New York, NY: Springer Publishing Co.
Kelley, S. J., Whitley, D., Sipe, T. A., & Yorker, B. C. (2000). Psychological distress in grandmother kinship care providers: The role of resources, social support, and physical health. Child Abuse and Neglect, 24, 311–321.
Keogh, B. K., Garnier, H. E., Bernhiemer, L. P., & Gallimore, R. (2000). Models of childfamily interactions for children with developmental delays: Child-driven or transactional? American Journal on Mental Retardation, 105, 32–46.
King, G., Cathers, T., Brown, E., Specht, J. A., Willoughby, C., Polgar, J. M., et al. (2003). Turning points and protective processes in the lives of people with chronic disabilities. Qualitative Health Research, 13, 184–206.
Kinney, J. M., McGrew, K. B., & Nelson, I. M. (2003). Grandparent caregivers to children with developmental disabilities: Added challenges. In B. Hayslip, Jr. & J. H. Patrick (Eds.), Working with custodial grandparents (pp. 93–109). New York: Springer.
Kraemer, B. R., & Blacher, J. (2001). Transition for young adults with severe mental retardation: School preparation, parent expectations, and family involvement. Mental Retardation, 39, 423–436.
Krauss, M.W. (1993). Child-related and parenting stress: Similarities and differences between mothers and fathers of children with disabilities. American Journal on Mental Retardation, 97, 393–404.
*Kuo, A. Y., Reiss, A. L., Freund, L. S., & Huffman, L. C. (2002). Family environment and cognitive abilities in girls with fragile-X syndrome. Journal of Intellectual Disability Research, 46, 328–339.
Lazar, I., & Darlington, R. (1982). Lasting effects of early education: A report from the consortium for longitudinal studies. Monographs of the Society for Research in Child Development, 47(2, 3), 1–151.
Leung, P., & Erich, S. (2002). Family functioning of adoptive children with special needs: Implications of familial supports and child characteristics. Children and Youth Services Review, 24, 799–816.
Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3–9.
Lunsky, Y., & Benson, B. A. (2001). Association between perceived social support and strain, and positive and negative outcome for adults with mild intellectual disability. Journal of Intellectual Disability Research, 45, 106–114.
Lunsky, Y., & Havercamp, S. M. (1999). Distinguishing low levels of social support and social strain: Implications for dual diagnosis. American Journal on Mental Retardation, 104, 200–204.
Lynch, E. W., & Hanson, M. J. (1992). Developing cross-cultural competence: A guide for working with young children and their families. Baltimore, MD: Paul H. Brookes.
MacLean, W. E. (1997). Ellis’ handbook of mental deficiency, psychological theory and research (3rd ed.). Mahwah, New Jersey: Lawrence Erlbaum Associates.
*Magaña, S. M. (1999). Puerto Rican families caring for an adult with mental retardation: Role of familism. American Journal on Mental Retardation, 104, 466–482.
Manuel, J., Naughton, M. J., Balkrishnan, R., Smith, B. P., & Koman, A. (2003). Stress and adaptation in mothers of children with cerebral palsy. Journal of Pediatric Psychology, 28, 197–201.
Marfo, K. (1990). Maternal directiveness in interactions with mentally handicapped children: An analytical commentary. Journal of Child Psychology and Psychiatry, 31, 531–549.
Marfo, K., Dedrick, C. F., & Barbour, N. (1998). Mother-child interactions and the development of children with mental retardation. In J. A. Burack, R. M. Hodapp, & E. Zigler (Eds.), Handbook of mental retardation and development (pp. 637–668). New York: Cambridge University Press.
Martin, J. M., & Cole, D. A. (1993). Adaptability and cohesion of dyadic relationships in families with developmentally disabled children. Journal of Family Psychology, 7, 186–196.
Mauldon, J. (1992). Children’s risk of experiencing divorce and remarriage: Do disabled children destabilize marriages? Population Studies, 46, 349–362.
McCallion, P., Janicki, M. P., & Grant-Griffin, L. (1997). Exploring the impact of culture and acculturation on older families care giving for persons with developmental disabilities. Family Relations: Interdisciplinary Journal of Applied Family Studies, 46, 347–357.
McCubbin, H. I., & Patterson, J. M. (1982). Family adaptation to crises. In H. I. McCubbin, A. E. Cauble, & J. M. Patterson (Eds.), Family stress, coping, and social support (pp. 26–47). Springfield, Illinois: Charles C Thomas.
McHale, S. M., & Gamble, W. C. (1989). Sibling relationships of children with disabled and non-disabled brothers and sisters. Developmental Psychology, 25, 421–429.
McHale, S. M., & Pawletko, T. M. (1992). Differential treatment of siblings in two family contexts. Child Development, 63, 68–81.
Menard, J., Schoolcraft, S. A., Glidden, L. M., & Lazarus, C. (2002, March). Transition daily rewards and worries [Abstract]. Poster presented at the 35th Annual Gatlinburg Conference, San Diego, CA.
*Miltiades, H. B., & Pruchno, R. (2001). Mothers of adults with developmental disability: Change over time. American Journal on Mental Retardation, 106, 548–561.
Mink, I. T., Meyers, C. E., & Nihira, K. (1984). Taxonomy of family life styles: II. Homes with slow-learning children. American Journal of Mental Deficiency, 89, 111–123.
Mink, I. T., & Nihira, K. (1987). Direction of effects: Family life styles and behavior of TMR children. American Journal of Mental Deficiency, 92, 57–64.
Minnes, P. (1988). Family stress associated with a developmentally handicapped child. In N. W. Bray (Ed.), International review of research in mental retardation (Vol 15, pp. 195–226). San Diego: Academic Press.
Minnes, P. (1998). Mental retardation: The impact upon the family. In J. A. Burack, R. M. Hodapp, & E. Zigler (Eds.), Handbook of mental retardation and development (pp. 693–712). New York: Cambridge University Press.
Moos, R. H., & Moos, B. S. (1986). Family Environment Scale manual. Palo Alto, CA: Consulting Psychologists Press.
Mulick, J. A. (2003, August). Is learning recovery in autism happening? Gains made in cognitive abilities, adaptive behavior, language, and autistic symptom severity after early intensive behavioral intervention for children with Autism. In J. A. Mulick (Chair), Preliminary reports from the Ohio Autism Recovery Project. Symposium conducted at the 111th Annual Convention of the American Psychological Society, Toronto, Canada.
Mulick, J. A., Hammer, D., & Dura, J. R. (1991). Assessment and management of antisocial and hyperactive behavior. In J. L. Matson & J. A. Mulick (Eds.), Handbook of mental retardation (pp. 397–412). New York: Pergamon Press.
Myerhoff, B., & Tufte, V. (1979). Introduction. In V. Tufte & B. Myerhoff (Eds.), Changing images of the family (pp. 1–23). New Haven: Yale University Press.
Nelson, W. P., & Levant, R. F. (1991). An evaluation of a skills training program for parents in stepfamilies. Family Relations, 40, 291–296.
Norris, F. H., & Kaniasty, K. (1996). Received and perceived social support in times of stress: A test of the social support deterioration deterrence Model. Journal of Personality and Social Psychology, 71, 498–511.
Olson, D. H., McCubbin, H., Barnes, H., Larsen, A., Muxen, M., & Wilson, M. (1985). Family inventories. Minneapolis: University of Minnesota, Family Social Science.
Olson, D. H., Sprenkle, D. H., & Russell, C. S. (1979). Circumplex model of marital and family systems: I. Cohesion and adaptability dimensions, family types, and clinical applications. Family Process, 18, 3–28.
Olson, D. H., Tiesel, J. W., & Gorall, D. (1996). Family adaptability and cohesion scale IV. Minneapolis, MN: University of Minnesota, Family Social Science.
Olsson, M. B., & Hwang, C. (2001). Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual Disability Research, 45, 535–543.
Olsson, M. B., & Hwang, C. (2002). Sense of coherence in parents of children with different developmental disabilities. Journal of Intellectual Disability Research, 46, 548–559.
Olstad, R., Sexton, H., & Sogaard, A. J. (2001). The Finnmark study: A prospective population study of the social support buffer hypothesis, specific stressors and mental distress. Social Psychiatry and Psychiatric Epidemiology, 36, 582–589.
Orsmond, G. I., & Seltzer, M. M. (2000). Brothers and sisters of adults with mental retardation: Gendered nature of the sibling relationship. American Journal on Mental Retardation, 105, 486–508.
Orsmond, G. I., Seltzer, M. M., Krauss, M. W., & Hong, J. (2003). Behavior problems in adults with mental retardation and maternal well-being: Examination of the direction of effects. American Journal on Mental Retardation, 108, 257–271.
*Padeliadu, S. (1998). Time demands and experienced stress in Greek mothers of children with Down’s syndrome. Journal of Intellectual Disability Research, 42, 144–153.
Padula, M. A. (1995). Assessment issues in families of individuals with disabilities. In J. C. Conoley & E. B. Werth (Eds.), Family assessment (pp. 261–284). Omaha, NB: Buros Institute of Mental Measurements, University of Nebraska Press.
Pal, D. K., Chaudhury, G., Das, T., & Sengupta, S. (2002). Predictors of parental adjustment to children’s epilepsy in rural India. Child: Care, Health and Development, 28, 295–300.
Pruchno, R. A., Patrick, J. H., & Burant, C. L. (1999). Effects of formal and familial residential plans for adults with mental retardation on their aging mothers. American Journal on Mental Retardation, 104, 38–52.
Ramey, C. T., & Ramey, S. L. (1998). Early intervention and early experience. American Psychologist, 53, 109–120.
Reichman, N. E., Corman, H., & Noonan, K. (2004). Effects of child health on parents’ relationship status. Demography, 41, 569–584.
Ricci, L. A., & Hodapp, R. M. (2003). Fathers of children with Down’s syndrome versus other types of intellectual disability: Perceptions, stress and involvement. Journal of Intellectual Disability Research, 47, 273–284.
Risdal, D., & Singer, G. H., S. (2004). Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research and Practice for Persons with Severe Disabilities, 29, 95–103.
*Roach, M. A., Orsmond, G. I., & Barratt, M. S. (1999). Mothers and fathers of children with Down syndrome: Parental stress and involvement in child care. American Journal on Mental Retardation, 104, 422–436.
*Rodgers, A. Y. (1998). Multiple sources of stress and parenting behavior. Child and Youth Services Review, 20, 525–546.
Rogers-Dulan, J. (1998). Religious connectedness among urban African American families who have a child with disabilities. Mental Retardation, 36, 91–103.
Rogers-Dulan, J., & Blacher, J. (1995). African American families, religion, and disability: A conceptual framework. Mental Retardation, 33, 226–238.
Rousey, A. M., Wild, M., & Blacher, J. (2002). Stability of measures of the home environment for families of children with severe disabilities. Research in Developmental Disabilities, 23, 17–35.
Sabatelli, R. M., & Bartle, S. E. (1995). Survey approaches to the assessment of family functioning: Conceptual, operational, and analytical issues. Journal of Marriage and the Family, 57, 1025–1039.
*Sarimski, K. (1997). Communication, social-emotional development and parenting stress in Cornelia-de-lange syndrome. Journal of Intellectual Disability Research, 41, 70–75.
Schoolcraft, S. A., & Glidden, L. M. (2002, March). Still happy after all these years? Family well being across the lifespan: Tracking maternal depression as children transition to adulthood [Abstract]. In J. Blacher (Chair), Still happy after all these years? Family well-being across the lifespan. Symposium conducted at the 35th Annual Gatlinburg Conference, San Diego, CA.
Schoolcraft, S. A., & Glidden, L. M. (2003, March). Sources of Support in Rearing Children with Developmental Disabilities [Abstract]. Poster session presented at the 36th annual Gatlinburg Conference, Annapolis, MD.
Schumm, W. R. (1990). Intimacy and family values. In J. Touliatos, B. F. Perlmutter, & M. A. Straus. Handbook of family measurement techniques (pp. 164–284). Newbury Park, CA: Sage Publications.
*Scorgie, K., & Sobsey, D. (2000). Transformational outcomes associated with parenting children who have disabilities. Mental Retardation, 38, 195–206.
Seligman, M. E. P., & Csikszentmihalyi, M. (2000). Positive psychology: An introduction. American Psychologist, 55, 5–14.
*Seltzer, M. M., Greenberg, J. S., Floyd, F. J., Pettee, Y., & Hong, J. (2001). Life course impacts of parenting a child with a disability. American Journal on Mental Retardation, 106, 265–286.
Seltzer, M. M., & Heller, T. (1997). Families and care giving across the life course: Research advances on the influence of context. Family Relations, 46, 321–323.
*Seltzer, M. M., Krauss, M. W., Hong, J., & Orsmond, G. I. (2001). Continuity or discontinuity of family involvement following residential transitions of adults who have mental retardation. Mental Retardation, 39, 181–194.
Seltzer, M. M., Krauss, M.W., & Tsunematsu, N. (1993). Adults with Down syndrome and their aging mothers: Diagnostic group differences. American Journal on Mental Retardation, 97, 496–508.
Sexton, D., Burrell, B., Thompson, B., & Sharpton, W. R. (1992). Measuring stress in families of children with disabilities. Early Education and Development, 3, 60–66.
Sgandurra, C. A. (2001). The relationship between family functioning and sibling adjustment in families with a child with a developmental disability. Dissertation Abstracts International: Section B: The Sciences & Engineering, 62(3-B), 1598.
Shapiro, J., Blacher, J., & Lopez, S. R. (1998). Maternal reactions to children with mental retardation. In J. A. Burack (Ed.), Handbook of mental retardation and development (pp. 606–636). New York: Cambridge University Press.
Sheldon, K. M., & King, L. (2001). Why positive psychology is necessary. American Psychologist, 56, 216–217.
Shin, J. Y. (2002). Social support for families of children with mental retardation: Comparison between Korea and the United States. Mental Retardation, 40, 103–118.
Skinner, H. A. (1987). Self-report instruments for family assessment. In: T. Jacob (Ed), Family interaction and psychopathology: Theories, methods, and findings (pp. 427–452). New York: Plenum Press.
Skinner, D., Rodriguez, P., & Bailey, D. B., Jr. (1999). Qualitative analysis of Latino parents’ religious interpretations of their child’s disability. Journal of Early Intervention, 22, 271–285.
Skinner, H., Steinhauer, P., & Sitarenios, G. (2000). Family assessment measure (FAM) and process model of family functioning. Journal of Family Therapy, 22, 190–210.
*Smith, G. C. (1997). Aging families of adults with mental retardation: Patterns and correlates of service use, need, and knowledge. American Journal on Mental Retardation, 102, 13–26.
Snyder, D. K., Cavell, T. A., Heffer, R. W., Mangrum, L. F. (1995). Marital and family assessment: A multifaceted, multilevel approach. In R. H. Mikesell, D. D. Lusterman, & S. H. McDaniel (Eds.), Integrating family therapy: Handbook of family psychology and systems theory (pp. 163–182). Washington, DC: American Psychological Association.
Somerfield, M. R., & McCrae, R. R. (2000). Stress and coping research: Methodological challenges, theoretical advances, and clinical applications. American Psychologist, 55, 620–625.
Steinhauer, P. (1987). The family as a small group: The process model of family functioning. In T. Jacob (Ed.), Family interaction and psychopathology: Theories, methods, and findings (pp. 67–115). New York: Plenum Press.
Stoneman, Z. (1997). Mental retardation and family adaptation. In W. E. MacLean, Jr. (Ed.), Ellis’ handbook of mental deficiency, psychological theory and research (pp. 405–437). Mahwah, NJ: Lawrence Erlbaum Associates.
Stoneman, Z. (1998). Research on siblings of children with mental retardation: Contributions of developmental theory and etiology. In J. A. Burack R. M. Hodapp, & E. Zigler (Eds.), Handbook of mental retardation and development (pp. 669–692). New York: Cambridge University Press.
Stores, R., Stores, G., Fellows, B., & Buckley, S. (1998). Daytime behavior problems and maternal stress in children with Down’s syndrome, their siblings, and non-intellectually disabled and other intellectually disabled peers. Journal of Intellectual Disability Research, 42, 228–237.
Tannock, R. (1988). Mothers’ directiveness in their interactions with their children with and without Down syndrome. American Journal on Mental Retardation, 93, 154–165.
Tate, D. G., & Pledger, C. (2003). An integrative conceptual framework of disability: New directions for research. American Psychologist, 58, 289–295.
Touliatos, J., Perlmutter, B. F., & Straus, M. A. (1990). Handbook of family measurement techniques. Newbury Park, CA: Sage Publications.
Trute, B., & Hauch, C. (1988). Building on family strength: A study of families with positive adjustment to the birth of a developmentally disabled child. Journal of Marital and Family Therapy, 14, 185–193.
Trute, B., & Hiebert-Murphy, D. (2002). Family adjustment to childhood developmental disability: A measure of parent appraisal of family impacts. Journal of Pediatric Psychology, 27, 271–280.
Urbano, R. C., & Hodapp, R. M. (2005, March). Divorce in families of children with Down syndrome: A population-based study. Paper presented at the 38th Annual Gatlinburg conference on Research & Theory in Intellectual & Developmental Disabilities, Annapolis, MD.
U.S. Department of Education (2000). Annual report to Congress on the implementation of the Individuals with Disabilities Education Act. Washington, DC: Author.
U.S. Department of Education (2001). Annual report to Congress on the implementation of the Individuals with Disabilities Education Act. Washington, DC: Author.
Westhues, A., & Cohen, J. S. (1990). Preventing disruption of special-needs adoptions. Child Welfare, 69, 141–155.
Wolf, L., Fisman, S., Ellison, D., & Freeman, T. (1998). Effects of sibling perception of differential treatment in sibling dyads with one disabled child. Journal of the American Academy of Child & Adolescent Psychiatry, 37, 1317–1325.
SUGGESTED READINGS
Note: These following references were included in the Recent Journal Sample of 51 articles on family assessment and were reviewed, but not cited in the preceding text.
Baker, B. L., Blacher, J., Crnic, K. A., & Edelbrock, C. (2002). Behavior problems and parenting stress in families of three year old children with and without developmental delays. American Journal on Mental Retardation 107, 433–444.
Blacher, J., Shapiro, J., Lopez, S., & Diaz, L. (1997). Depression in Latina mothers of children with mental retardation: A neglected concern. American Journal on Mental Retardation, 101, 483–496.
Clare, L., Garnier, H., & Gallimore, R. (1998). Parents’ developmental expectations and child characteristics: Longitudinal study of children with developmental delays and their families. American Journal on Mental Retardation, 103, 117–129.
Cooney, B. F. (2002). Exploring perspectives on transition of youth with disabilities: Voices of young adults, parents, and professionals. Mental Retardation, 40, 425–435.
Einam, M., & Cuskelly, M. (2002). Paid employment of mothers and fathers of an adult child with multiple disabilities. Journal of Intellectual Disability Research, 46, 158–167.
Essex, E. L., Seltzer, M. M., & Krauss, M. W. (1999). Differences in coping effectiveness and well-being among aging mothers and fathers of adults with mental retardation. American Journal on Mental Retardation, 104, 545–563.
Freedman, R. I., Krauss, M. W., & Seltzer, M. M. (1997). Aging parents’ residential plans for adult children with mental retardation. Mental Retardation, 35, 114–123.
Grissom, M. O., & Borkowski, J. G. (2002). Self-efficacy in adolescents who have siblings with or without disabilities. American Journal on Mental Retardation, 107, 79–90.
Hanneman, R., & Blacher, J. (1998). Predicting placement in families who have children with sever handicaps: A longitudinal analysis. American Journal on Mental Retardation, 102, 392–408.
Hayden, M. F., & Heller, T. (1997). Support, problem-solving/coping ability, and personal burden of younger and older caregivers of adults with mental retardation. Mental Retardation, 35, 364–372.
Llewellyn, G., Dunn, P., Fante, M., Turnbull, L., & Grace, R. (1999). Family factors influencing out-of-home placement decisions. Journal of Intellectual Disability Research, 43, 219–233.
McIntyre, L., Blacher, J., & Baker, B. (2002). Behavior/mental health problems in young adults with intellectual disability: the impact on families. Journal of Intellectual Disability Research, 46, 239–249.
Scott, B. S., Atkinson, L., Minton, H. L., Bowman, T. (1997). Psychological distress of parents of infants with Down syndrome. American Journal on Mental Retardation, 102, 161–171.
Shearn, J., & Todd, S. (1997). Parental work: An account of the day-to-day activities of parents of adults with learning disabilities. Journal of Intellectual Disability Research, 41, 285–301.
Shu, B., Lung, F. & Huang, C. (2002). Mental health of primary family caregivers with children with intellectual disability who receive a home care program. Journal of Intellectual Disability Research, 46, 257–263.
Warfield, M. E. (2001). Employment, parenting, and well-being among mother of children with disabilities. Mental Retardation, 39, 297–309.
Author information
Authors and Affiliations
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2007 Springer
About this chapter
Cite this chapter
Glidden, L.M., Schoolcraft, S.A. (2007). Family Assessment and Social Support. In: Jacobson, J.W., Mulick, J.A., Rojahn, J. (eds) Handbook of Intellectual and Developmental Disabilities. Issues on Clinical Child Psychology. Springer, Boston, MA. https://doi.org/10.1007/0-387-32931-5_21
Download citation
DOI: https://doi.org/10.1007/0-387-32931-5_21
Publisher Name: Springer, Boston, MA
Print ISBN: 978-0-387-32930-7
Online ISBN: 978-0-387-32931-4
eBook Packages: Behavioral ScienceBehavioral Science and Psychology (R0)