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Family processes and parent involvement

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Book cover Scientific Studies in Mental Retardation

Abstract

During the mid-1900s interest in the families of the mentally handicapped increased from “a trickle of armchair papers (to) almost a flood” (Wolfensberger, 1967) with most of the discussion on parent dynamics. By the 1970s the major studies focused on the handicapped child’s effect on the family while the first studies demonstrating parents’ capacities for helping their own children had begun to appear (Carr, 1974). In the ensuing decade the emphasis has shifted firmly towards these self-help programmes while studies of family functioning and of the effects of changing services have also been prominent.

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References

  • Attwood, T. (1977). The Priory parents’ workshop. Child: Care, Health and Development, 3, 81–91

    Google Scholar 

  • Baker, B.L., Heifetz, L.J. and Murphy, D.M. (1980). Behavioral training for parents of mentally retarded children: one-year follow-up. American Journal of Mental Deficiency, 85, 31–38

    CAS  PubMed  Google Scholar 

  • Berry, P., Gunn, P., Andrews, R. and Price, C. (1981). Characteristics of Down syndrome infants and their families. Australian Paediatric Journal, 17, 40–43

    CAS  PubMed  Google Scholar 

  • Bidder, R.T., Bryant, G. and Gray, 0.P. (1975). Benefits to Down’s Syndrome children through training their mothers. Archives of Disease in Childhood, 50, 383–386

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  • Black, D. (1982). Handicap and family therapy. In: Bentovim, A., Gorell Barnes, G. and Cooklin, A. (eds.). Family Therapy. Complementary Framework of Theory and Practice. London. Academic Press.

    Google Scholar 

  • Black, J.M.M., (1978). Families with handicapped children - who helps whom and how? Child: Care, Health and Development, 4, 239–245

    Google Scholar 

  • Bradshaw, J. (1980). The Family Fund. Routledge and Kegan Paul, London

    Google Scholar 

  • Brassell, W.R. (1977). Intervention with handicapped infants: correlates of progress. Mental Retardation, 15, 18–22

    CAS  PubMed  Google Scholar 

  • Brimblecombe, F.S.W. (1979). A new approach to the care of handicapped children. Journal of the Royal College of Physicians of London, 13, 231–236

    CAS  PubMed  Google Scholar 

  • Bromley, D. and Lister, P. (1980). Relief families. Adoption and Fostering, 4, 43–5

    Article  Google Scholar 

  • Burden, R.L. (1978). An approach to the evaluation of early intervention projects with mothers of severely handicapped children; the attitude dimension. Child: Care, Health and Development, 4, 171–181

    Google Scholar 

  • Callias, M. and Carr, J. (1975). Behaviour modification programmes in a community setting. In Kiernan, C.C. and Woodford, F.P. (Eds.) Behaviour Modification with the Severely Retarded. Associated Scientific Publishers, Amsterdam. 147–171

    Google Scholar 

  • Cameron, R.J. (1979). A lot can happen at home too. Remedial Education. 14, (4), 173–178

    Google Scholar 

  • Carr, J. (1970). Mongolism: telling the parents. Developmental Medicine and Child Neurology, 12, 213–221

    Article  CAS  PubMed  Google Scholar 

  • Carr, J. (1974). The effect of the severely subnormal on their families. In Clarke, A.M. and Clarke, A.D.B. (eds.), Mental Deficiency - the Changing Outlook. Methuen, London. 807–839

    Google Scholar 

  • Carr, J. (1976). Effect on the family of a child with Down’s syndrome. Physiotherapy, 62, 20–24

    CAS  PubMed  Google Scholar 

  • Carr, J. (1982). The methodology of early intervention studies in severe mental handicap. Paper given at the 13th International Study Group on Child Neurology and Cerebral Palsy. Oxford

    Google Scholar 

  • Carr, J., Pearson, A.M. and Halliwell, M.D. (1983). The GLC Spina Bifida Survey: 11 and 12 years follow-up. Final report. DES.

    Google Scholar 

  • Chinitz, S.P. (1981). A sibling group for brothers and sisters of handicapped children. Children Today, Nov-Dec, 21–23

    Google Scholar 

  • Cleveland, D.W. and Miller, N. (1977). Attitudes and life commitments of older sibs of mentally retarded adults: an exploratory study. Mental Retardation, 15(3), 38–41

    CAS  PubMed  Google Scholar 

  • Connolly, B., Morgan, S., Russell, F.F. and Richardson, B. (1980). Early intervention with Down’s Syndrome children. Follow-up report. Physical Therapy, 60. 1405–8

    Google Scholar 

  • Cunningham, C.C., Aumonier, M.E. and Sloper, P. (1982). Health visitor support for families with Down’s Syndrome infants. Child: Care, Health and Development, 8, 1–9

    Google Scholar 

  • Cunningham, C. and Jeffree, D.M. (1971). Working with Parents: Developing a Workshop Course for Parents of Young Mentally Handicapped Children. Manchester: National Society for Mentally Handicapped Children, NW Region

    Google Scholar 

  • Doernberg, N.L. (1978). Some negative effects on family integration of health and education services. Rehabilitation Literature, 39, 107–110

    CAS  PubMed  Google Scholar 

  • Doleys, D.M., Doster, J. and Cartelli, L.M. (1976). Parent training techniques: effects of lecture-role playing followed by feedback and self-recording. Behaviour Therapy and Experimental Psychiatry, 7, 359–362

    Article  Google Scholar 

  • Dorner, S. (1975). The relationship of physical handicap to stress in families with an adolescent with Spina Bifida. Developmental Medicine and Child Neuroloav. 17. 765–776

    Article  CAS  Google Scholar 

  • Drillien, C.M. and Wilkinson, E.M. (1964). Mongolism: When should parents be told. British Medical Journal, 2, 1306–7

    Google Scholar 

  • Drotar, D., Baskiewicz, A., Irvin, N., Kennell, J. and Klaus, M. (1975). The adaptation of parents to the birth of an infant with a congenital malformation: a hypothetical model. Pediatrics, 56, 710–717

    CAS  PubMed  Google Scholar 

  • Dunlap, W.R. and Hollinsworth, J.S. (1977). How does a handicapped child affect the family? Implications for practitioners. The Family Co-ordinator, 26, 286–293

    Article  Google Scholar 

  • Dupont, A. (1980). A study concerning the time-related and other burdens when severely handicapped children are reared at home. Acta Psychiatrica Scandinavia, Supplement 285, 62, 249–257

    Google Scholar 

  • Ellington, S. (1982). Children in the shadows. Working with siblings of handicapped children. Paper presented to the 13th International Study Group on Child Neurology and Cerebral Palsy, St Edmund Hall, Oxford

    Google Scholar 

  • Ferguson, N. and Watt, J. (1980). The mothers of children with special educational needs. Scottish Educational Review, 12, 21–31

    Google Scholar 

  • Friedrich, W.N. and Friedrich, W.L. (1981). Psychosocial assets of parents of handicapped and non-handicapped children. American Journal of Mental Deficiency, 85, 551–553

    CAS  PubMed  Google Scholar 

  • Fulwood, D. (1981). Mum or Supermum? Australian Citizen Limited, Aug. 24, 1–7

    Google Scholar 

  • Gath, A. (1973). The school age siblings of mongol children. British Journal of Psychiatry, 123, 161

    Article  CAS  PubMed  Google Scholar 

  • Gath, A. (1974). Sibling reactions to mental handicap: a comparison of the brothers and sisters of mongol children. Journal of Child Psychology and Psychiatry, 15, 187–198

    Article  CAS  PubMed  Google Scholar 

  • Gath, A. (1978). Down’s Syndrome and the Family: The early years. Academic Press, London

    Google Scholar 

  • Gilbert, P. (1980). Fostering and mental handicap. Adoption and Fostering, 4, 3–6

    Google Scholar 

  • Goddard, J. and Rubissow, J. (1977). Meeting the needs of handicapped children and their families. The evolution of Honeylands: a family support unit, Exeter. Child: Care, Health and Development. 3, 261–273

    Google Scholar 

  • Gomersall, J.D. (1981). Family psychotherapy and mental handicap. Paper presented at pre-conference workshop: Combined Asian and Regional Commonwealth Congress on the Scientific Study of Mental Deficiency, Bromley

    Google Scholar 

  • Hanson, M.J. and Schwarz, H. (1978). Longitudinal intervention program for Down’s Syndrome infants. Education and Training of the Mentally Retarded, 13, 403–407

    Google Scholar 

  • Harris, J. (1978). Working with parents of mentally handicapped children on a long-term basis. Child: Care, Health and Development, 4, 121–128

    Google Scholar 

  • Hart, D. and Walters, J. (1979a). Brothers and sisters of mentally handicapped children. Unpublished manuscript

    Google Scholar 

  • Hart, D. and Walters, J. (1979b). A group work project with siblings of mentally handicapped children. Unpublished manuscript

    Google Scholar 

  • Health and social services Journal (lytiZ). Keports and Yapers, Jan. 7th, 35

    Google Scholar 

  • Holland, J. .(1981). The Lancaster Portage project. Health Visitor, 54, 486–488

    CAS  PubMed  Google Scholar 

  • Holland, J.M. and Hattersley, J. (1980). Parent support groups for the families of mentally handicapped children. Child: Care, Health and Development, 6,165–173

    Google Scholar 

  • Holroyd, J. and McArthur, D. (1976). Mental retardation and stress on parents; a contrast between Down’s syndrome and childhood autism. American Journal of Mental Deficiency, 80, 431–436

    CAS  PubMed  Google Scholar 

  • Howlin, P., Marchant, R., Rutter, M., Berger, M., Hersov, L. and Yule, W. (1973). A home based approach to the treatment of autistic children. Journal of Autism and Childhood Schizophrenia. 3, 308–336

    Article  CAS  PubMed  Google Scholar 

  • Jeffree, D.M., McConkey, R. and Hewson, S. (1977). A parental involvement project. In Mittler, P. (ed.), Research to Practice in Mental Retardation. Vol 1: Care and Intervention. IASSMD. University Park Press, Baltimore. 229–236

    Google Scholar 

  • Justice, R.S., O’Connor, G. and Warren, N. (1971). Problems reported by parents of mentally retarded children - who helps? American Journal of Mental Deficiency, 75, 685–691

    CAS  PubMed  Google Scholar 

  • Lacoste, R.J. (1978). Early intervention: can it hurt? Mental Retardation, 16, 266–268

    CAS  PubMed  Google Scholar 

  • Landesman-Dwyer, S. (1981). Living in the community. American Journal ofMental Deficiency, 86, 223–234

    CAS  Google Scholar 

  • Lavigeur, H. (1976). The use of siblings as an adjunct to the behavioural treatment of children in the home with parents as therapists. Behaviour Therapy, 7, 602–613

    Article  Google Scholar 

  • Lloyd-Bostock, S. (1976). Parents’ experiences of official help and guidance in caring for a mentally handicapped child. Child: Care, Health and Development, 2, 325–338

    Google Scholar 

  • Locker, D., Rao, B. and Weddell, J.M. (1981). The impact of community care on the public response to the mentally handicapped. Community Medicine, 3, 98–107

    CAS  PubMed  Google Scholar 

  • Lonsdale, G. (1978). Family life with a handicapped child: the parents speak. Child: Care, Health and Development, 4, 99–120

    Google Scholar 

  • Ludlow, J.K. and mien, L.M. (ly/y). ine errect or eariy intervention and pre-school stimulus on the development of the Down’s Syndrome child. Journal of Mental Deficiency Research, 23, 29–43

    Google Scholar 

  • Macaskill, C. (1981). Placing the mentally handicapped. Adoption and Fosterina. 5 46–49

    Article  Google Scholar 

  • McCall, C. and Thacker, J. (1977). A parent workshop in the school. Special Education, 4, 20–21

    CAS  Google Scholar 

  • Marks, L. (1980). Parents’ needs and how to meet them. In Simon, G.B. (ed.), Modern Management of Mental Handicap, MTP Press, Lancaster. 203–227

    Chapter  Google Scholar 

  • Meyer, R.J. (1980). Attitudes of parents of institutionalised mentally retarded individuals towards deinstitutionalization. American Journal of Mental Deficiency, 85, 184–187

    CAS  PubMed  Google Scholar 

  • Miller, N.B. and Cantwell, D.P. (1976). Siblings as therapists: a behavioral approach. American Journal of Psychiatry, 133(4), 447–450

    Article  CAS  PubMed  Google Scholar 

  • Mittler, P. (1979). Patterns of partnership between parents and professionals, Teaching and Training, 17, 111–116

    Google Scholar 

  • Nihira, K., Meyers, C.E. and Mink, I.T. (1980). Home environment, family adjustment and the development of mentally retarded children. Applied Research in Mental Retardation, 1, 5–24

    Article  CAS  PubMed  Google Scholar 

  • Piper, M.C. and Pless, I.B. (1980). Early intervention for infants with Down Syndrome: a controlled trial. Pediatrics, 65, 463–468

    CAS  PubMed  Google Scholar 

  • Pueschel, S.M. and Murphy, A. (1976). Assessment of counselling practices at the birth of a child with Down’s Syndrome. American Journal of Mental Deficiency, 81, 325–330

    Google Scholar 

  • Revill, S. and Blunden, R. (1979). A home training service for pre-school developmentally handicapped children. Behaviour Research and Therapy, 17, 207–214

    Article  CAS  PubMed  Google Scholar 

  • Reynolds, A.R. (1979). Some social effects of the mentally retarded child on the family: a third survey. Australian Journal of Aental Retardation, 5, 214–218

    Article  Google Scholar 

  • Rutter, M., Tizard, J. and Whitmore, K. (eds.) (1970). Education, Health and Behaviour. Longman, London

    Google Scholar 

  • Sanderson, H.W. and Crawley, M. (1982). Characteristics of successful family care patterns. American Journal of Mental Deficiency, 86, 519–525

    CAS  PubMed  Google Scholar 

  • Sandow, S.A., Clarke, A.D.B., Cox, M.V. and Stewart, F.L. (1981). Home intervention with parents of severely subnormal pre-school children: a final report, Child: Care, Health and Development. 7, 135–144

    Google Scholar 

  • Schou, A. (1977). Parents support parents. Research Exchange and Practice in Mental Retardation, 3, 233–243

    Google Scholar 

  • Shearer, M. and Shearer, D.E. (1972). The Portage project: a model for early childhood education. Exceptional Children, 36, 210–217

    Google Scholar 

  • Simeonsson, R.J. and McHale, S.M. (1981). Review: Research on handicapped children: sibling relationships. Child: Care, Health and Development, 7, 153–171

    Google Scholar 

  • Springer, A. and Steele, M.W. (1980). Effects of physicians’ early parental counselling on rearing of Down’s syndrome children. American Journal of Mental Deficiency, 85, 1–5

    CAS  PubMed  Google Scholar 

  • Sternlicht, M. (1978). Variables affecting foster care placement of institutionalized retarded residents. Mental Retardation, 16, 25–27

    CAS  PubMed  Google Scholar 

  • Suelzle, M. and Keenan, V. (1981). Changes in family support networks over the life cycle of mentally retarded persons. American Journal of Mental Deficiency, 86, 267–274

    CAS  PubMed  Google Scholar 

  • Turner, A.L. (1980). Therapy with families of a mentally retarded child. Journal of Marital and Family Therapy, 6, 167–170.

    Article  Google Scholar 

  • Upshur, C.C. (1982). Respite care for mentally retarded and other disabled populations: program models and family needs. Mental Retardation, 20, 2–6

    CAS  PubMed  Google Scholar 

  • Waisbren, S.E. (1980). Parents’ reactions after the birth of a developmentally disabled child. American Journal of Mental Deficiency, 84, 345–351

    CAS  PubMed  Google Scholar 

  • Weinrott, M.R. (1974). A training program in behavior modification for siblings of the retarded. American Journal of Orthopsychiatry, 44, 362–375

    Article  CAS  PubMed  Google Scholar 

  • Willer, B.S., Intagliata, J.C. and Atkinson, A.C. (1981). Deinstitutionalization as a crisis event for families of mentally retarded persons. Mental Retardation, 19, 28–29

    CAS  PubMed  Google Scholar 

  • Wing, L. (1971). Severely retarded children in a London area: prevalence and provision of services. Psychological Medicine, 1, 405–415

    Article  CAS  PubMed  Google Scholar 

  • Wolfensberger, W. (1967). Counselling parents of the retarded. In Baumeister, A. (ed.) Mental Retardation. Univ. of London Press, London. 329–400

    Google Scholar 

  • Zigler, E. (1981). A plea to end the use of the patterning treatment for retarded children. American Journal of Orthopsychiatry, 51, 388–390

    Article  CAS  PubMed  Google Scholar 

  • Adubato A., Adams D. and Budd K.S., (1981), Teaching a parent to train a spouse in child management techniques, Journal of Applied Behaviour Analysis, 14, 193–205

    Article  CAS  Google Scholar 

  • Beck A.T., (1976), Cognitive Therapy and the Emotional Disorders, International University Press, New York

    Google Scholar 

  • Ellis A., (1962), Reason and Emotion in Psychotherapy, Lyle Stuart, New York

    Google Scholar 

  • Felce D., Kushlick A., Lunt B. and Powell L., (1977), Evaluation of locally-based hospital units in Wessex: Detailed rules for setting-up and maintenance of the units, Report No 124, Health Care Evaluation Research Team, Winchester

    Google Scholar 

  • Goldiamond I., (1974), Toward a constructional approach to social problems, Behaviorism, 2, 1–84

    PubMed  Google Scholar 

  • Kelly M.L., Embry L.N. and Baer D.M., (1979), Skills for child management and family support: training parents for maintenance. Behaviour Modification, 3, 373–396

    Article  Google Scholar 

  • Koegel R.L., Glahn T.J. and Nieminen G.W., (1978), Generalization of parent-training results, Journal of Applied Behavior Analysis, 11, 95–109

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  • Meichenbaum D.H., (1974), Cognitive Behavior Modification, General Learning Press, New Jersey

    Google Scholar 

  • Schwartz A. and Goldiamond I., (1975), Social Casework, A Behavioral Approach, Columbia University Press

    Google Scholar 

  • Sidman M., (1960), Tactics for Scientific Research, Basic Books, New York

    Google Scholar 

  • Mittler, P., Cheseldine, S. and McConachie, H. (1981). Roles and Needs of Parents of Handicapped Adolescents. CERI, OECD, Paris

    Google Scholar 

  • Turnbull, M.A. and Turnbull, H. (eds.) (1978). The Other Side of the Two Way Mirror. Parents Speak Out. Merrill, Columbus, Ohio

    Google Scholar 

  • Wilkin, D. (1979). Caring for the Mentally Handicapped Child. Croom Helm, London

    Google Scholar 

  • Daly, M. and Wilson, M. (1978). Sex, Evolution and Behaviour. Duxbury Press, North Seituate, Massachusetts

    Google Scholar 

  • MacArthur, R.H. (1962). Some generalised theorems of natural selection. Proceedings of the National Academy of Sciences, 48, 1893–1897

    Article  CAS  Google Scholar 

  • Ounsted, C., Lindsay, J.M. and Norman, R.M. (1966). Biological Factor in Temporal Lobe Epilepsy. Heineman, London

    Google Scholar 

  • Taylor, D.C. (1983/4). The psychological effects of chronic illness in childhood. In Rutter, M. and Hersov, L. (eds.), Child Psychiatry, Blackwell, Oxford

    Google Scholar 

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© 1984 The Royal Society of Medicine

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Carr, J. (1984). Family processes and parent involvement. In: Dobbing, J., Clarke, A.D.B., Corbett, J.A., Hogg, J., Robinson, R.O. (eds) Scientific Studies in Mental Retardation. Palgrave Macmillan, London. https://doi.org/10.1007/978-1-349-06870-8_20

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