Abstract
The birth of a child who has a handicap is a great disappointment for parents. Their baby does not meet the expectations that they developed during the past nine months. What they value in their lives and parenthood has been tossed in the air. Parents may face emotional problems and difficulties in the upbringing of their child with mental retardation. They may also be confronted with fundamental questions regarding the meaning of life of their child and of their own lives as parents.
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Notes
See, e.g., B.L. Baker, J. Blacher, C.B. Kopp, B. Kraemer, “Parenting Children with Mental Retardation”, in N.W. Bray (ed.), International Review of Research in Mental Retardation, vol. 20. San Diego: Academic Press, (1997), pp. 1–45; B. Farber, I. De011os, “Increasing Knowledge on Family Issues: a Research Agenda for 2000”, in L. Rowitz (ed.), Mental Retardation in the Year 2000. New York: Springer-Verlag, 1992, pp. 6, 9–84.
See K.S. Frey, M.T. Greenberg, R.R. Fewell, “Stress and Coping among Parents of Handicapped Children: a Multidimensional Approach”, American Journal on Mental Retardation, Vol. 94, no. 3 (1989), pp. 240–9;
L. Masters Glidden, “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, Vol. 97, no. 5 (1993), pp. 481–95.
Haworth, Hill, and Masters Glidden, and Weisner, Beizer and Stolze researched the influence of religious worldviews on the acceptance of a handicapped child. They are one of the few who mention the parents’ experience of meaning. Their study reveals that for parents, their faith may be a means of interpreting and giving meaning to the disability and of interpreting suffering, trouble, and grief. The researchers do not seek to systematically describe the experience of meaning for parents. The central point in their study is the parents’ faith as a coping resource. See A.M. Haworth, A.E. Hill, L. Masters Glidden, “Measuring Religiousness of Parents of Children with Developmental Disabilities”, Mental Retardation, Vol. 34, no. 5 (1996), pp. 271–9;
T.S. Weisner, L. Beizer, and L. Stolze, “Religion and Families of Children with Developmental Delays”, American Journal on Mental Retardation, vol. 5, no 6 (1991), pp. 647–662.
Wolfensberger and Menolascino distinguish three types of reactions of parents upon having a handicapped child: novelty shock, reality stress, and value conflicts. Assisting parents with their “value conflicts” implies, they believe, the paying of attention to “ the meaning of life and its ultimate values” (p. 484). Our research focuses on this aspect of the coping problems of parents. See: W. Wolfensberger and F.J. Menolascino, “A Theoretical Framework for the Management of Parents of the Mentally Retarded”, in F.J. Menolascino (ed.), Psychiatric Approaches to Mental Retardation. New York: Basic Books, 1970, pp. 475–93.
Since the parents of children with profound multiple handicaps often share the care of their child with professionals (i.e. support workers in day-care centers and special housing facilities) early on, we also included them in our study. In the care of children with mental retardation, they carry a special responsibility, in addition to and with the parents. We asked them, mutatis mutandis, the same questions as with the parents. We wanted to know if and, if so, how the experience of meaning differs between parents and support workers. In this chapter, we have to limit ourselves to the parents. For a more detailed report of the entire research study, which includes both the parents and the support workers, see J. Stolk and H. Kars, Licht en schaduw: Een onderzoek naar de zinervaring van ouders en groepsleiders in de zorg voor kinderen met een ernstige, meervoudige handicap (Light and Shadow: a Survey of the Experiences of Meaning of Parents and Group Leaders in the Care of Children with Profound Multiple Handicaps). Amersfoort: Vereniging’s Heeren Loo, 1998.
The previous contribution of Frances M. Young about “parents in search of meaning in their family life” can be considered a personal development of this theme.
The fourth research question will be addressed in section three of this volume (esp. chapter 9) which focuses on Meaning and Medical Care.
Given the limited size of this contribution, information about the research method is limited. For more detailed information, see: See J. Stolk and H. Kars (1998) pp. 23–49.
These numbers indicate that those with a religious worldview are overrepresented in this survey, as the Yearbook of the Netherlands Central Statistics Agency has found that in 1995, 60% of the Dutch population was member of a denomination, whereas 40% was not. Netherlands Central Statistics Agency, Statistic Yearbook 1997. Voorburg: 1997, p. 51.
Of the researchers, one has a christian worldview, whereas the other has a non-christian worldview. This mixed background proved to be of considerable value in the interviews.
A.L. Strauss and J. Corbin, Basics of Qualitative Research: Grounded Theory Procedures and Techniques. London: Sage, 1990.
Y.S. Lincoln and E.G. Guba, Naturalistic Inquiry. London: Sage, 1985.
The Bible: Romans 8:20 (New International Version).
With reference to the fourth research question, a series of questions followed regarding the influence of society’s discussion about the prevention of handicaps on the experience of meaning of the parents. For their reaction, see chapter 9.
Cf. W. Wolfensberger and F.J. Menolascino, “A Theoretical Framework for the Management of Parents of the Mentally Retarded. ”
Cf. chapter 9, which discusses views of parents concerning the limits of medical care.
H. Kars, Nabijheidsonderzoek. Een visie op praktijkgericht gedragswetenschappelijk onderzoek (Proximity Research: A Concept of Practice-Oriented Behavioral Studies). Dissertation. Amsterdam: Universiteit van Amsterdam, 1996.
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Stolk, J., Kars, H. (2000). Parents’ Experiences of Meaning. In: Stolk, J., Boer, T.A., Seldenrijk, R. (eds) Meaningful Care. Springer, Dordrecht. https://doi.org/10.1007/978-94-015-9516-2_2
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