Write down a quick response to the news that your newborn baby has a disabling condition. Imagine that you had a baby yesterday and that you have just been told that this child has a condition which means that she will not grow and develop like other children and will always require care and support from others. How do you think you would respond? What sorts of processes do you think you may go through? Save what you have written; we will use it later in this unit.
Kearney, P. M, & Griffin, T. (2001). Between joy and sorrow: Being a parent of a child with a developmental disability. Journal of Advanced Nursing, 34, 582-592.Please read these papers in order when prompted during the "Lecture".
The wording used by some of the following authors, most particularly Olshansky's, may strike you as offensive. We have become increasingly sensitive to the impact of terminology on children and their families, and these terms are no longer used in the scholarly and clinical literature. It is important, however, to understand the evolution of our understanding of the impact of a child's disability on the parent-child relationship and on the parent's chronic grief experience as it relates to having a child with a disability.
Lindgren, C. L., Burke, M. L., Hainsworth, M. A., & Eakes, G. G. (1992). Chronic sorrow: A lifespan concept, Scholarly Inquiry for Nursing Practice: An International Journal, 6, 27-40.
Olshansky, S. (1962). Chronic sorrow: A response to having a mentally defective child, Social Casework, 43, 190-193.
Teel, C. S. (1991). Chronic sorrow: Analysis of the concept, Journal of Advanced Nursing, 16, 1311-1319.
Consider the following as chronic loss situations, where grief is an ongoing part of the experience.
As we all know, the experience of loss occurs for people in many situations other than the death of a loved one. Losses are an integral part of the experience of disability and chronic illness and, in contrast to a loss to death where the loss is finite, these losses are ongoing.
In this "lecture", I shall focus on work as it relates to parental responses to having a child with a disability as this is where my practice and research lie. However, after you have read the Teel (1991) and Lindgren, Burke, Hainsworth & Eakes (1992) papers, you should develop some sense of how the concepts relevant to the parental responses might be extrapolated to other situations where people experience loss through illness and disability. You might like to think of examples from your own experience which might have a "fit" with the concepts presented, and bring them up for class discussion.
The lecture will present the major theoretical influences in this area, with a particular emphasis on Olshansky's (1962) concept of "chronic sorrow".
We would probably all agree that the news of a child's disability is an overwhelming event for parents. People with disabilities have been viewed as burdens, as failures, as stigmatised and as objects of pity. For parents, the birth of a child with a disability may carry deeply symbolic meaning and may lead to feelings of fear, guilt and despair. The presence of a child with a disability is often viewed as a tragedy. (Pause here for a moment to reflect on the words you wrote at the beginning of this Unit.)
A number of approaches to explain the responses of parents to the negative impact of their child's disability can be identified in the literature. The dominant view is a time-bound model of grief, which contends that grieving occurs over a period of time, and that successful resolution of this process implies an acceptance of the child's disability. (Did any of you write down that you would "need to grieve before you could accept"?) Another approach which until recently has not commanded the same degree of professional recognition, is the concept of chronic sorrow, which contends that parents adapt, in a functional sense, to their child's condition, but do NOT ultimately accept it. (Did any of you write that you might not be able to accept such a child?) The influential work of Solnit and Stark (1961) examines the concept of mourning in relationship to the birth of a "defective child", and is included by many authors in discussion of time-bound models of grief (Clubb, 1991; Fraley, 1990; Lindgren, et al., 1992; Teel, 1991). (How many of you wrote that you would have to mourn the loss of your "dream/perfect child" before you could accept the one you have?)
This brief examination of the literature illustrates the following dominant themes:
However, some professionals practise from a conceptual base which questions the notion of acceptance and which holds such non-acceptance to be natural. Many such professionals draw on the concept of chronic sorrow.
(Take time out now to read Olshansky's paper.)
Whilst the language of Olshansky's work is a little dated, I think you will agree that it is pretty powerful stuff. When I first encountered this work as a student, I had an immediate response to it; it "made sense" to me. I had often asked myself, "Why should parents accept such a tragedy?" and "Who says they SHOULD accept?" It seemed to me that parents, whilst loving their children, might NEVER come to terms with the blow dealt to them and might continue to question and be angry. For me, this seemed reasonable. Olshansky legitimised this stance with his contention that, whilst functional adaptation for such parents usually occurs, grief is never resolved and recurs throughout the lifetime of the child. This is not a neurotic response, but a normal psychological response which has a basis inrreality.
As a nurse practitioner, I worked in the community with many families who had a member with a developmental disability. In the way of human beings, they managed in a variety of ways and exhibited an array of responses and ways of coping. As a new practitioner I found the concept of chronic sorrow to be a particularly useful one as it enabled me to accept a whole range of responses, as "normal". I was not in a hurry to classify families who had not finished grieving in a couple of years as "neurotic" or "pathological". As I came to know some families better, we would talk about their feelings and conceptual interpretations of them. Many people felt that the term "chronic sorrow" was a relevant one for them and expressed a certain relief at being "allowed" to be sad for a long time without the pressure of "having to get over things". Some said they would never get over their sorrow (despite the fact that they loved their children dearly).
In recent years, the concept of chronic sorrow has been analysed by nurses (Clubb, 1991; Fraley, 1990; Lindgren, et al., 1992; Teel, 1991) who have applied it to different groups - parents who have chronically ill children or premature babies; adults who have multiple sclerosis; elderly caregivers of spouses with dementia. In fact, the recent literature generalises the concept as a framework for understanding the responses to losses by the chronically ill and their caregivers.
(Now read the Teel and the Lindgren, et al. papers.)
Teel provides us with a useful summary of the distinguishing components of time-bound grief and chronic sorrow (p 1316) and promotes the usefulness of the concept in terms of its "normalcy". For me, this is the major appeal of the concept, i.e., it's OK to be sad. She calls for further research with additional populations.
Lindgren, et al. have broadened the application of the concept and their work continues. Again, they stress the "... normal reaction to a complicated, difficult situation in life" (p 39).
For myself, whilst finding the concept particularly useful and frequently relevant, I reached a point where I needed to find out more. Such a conceptualisation allowed us to interpret only the tragedy of the parents' experience, and paid no heed to their everyday joys. But that is another story as this unit is about "chronic grief/periodic grief". (For those of you who are interested, a summary of some of my research is available as a Web Resource: http://www.indiana.edu/~famlygrf/support/periodic.html.)
Before asking you to tell stories and discuss your thoughts, I would like to tell you a story which certainly broadens out the application of this concept. Not long ago I was conducting a class about the above concepts. As I was talking about chronic sorrow, one of the young woman got up and hurriedly left the room. I thought she must be unwell or something and didn't think too much of it. At break time I found her outside, obviously distressed, and she told me that the chronic sorrow talk had had an overwhelming impact on her. She asked to speak with me after class. About a year previously she had been viciously raped by a stranger when walking home from the train station after work one night. Her attacker had never been found. She and her mother lived together and her mother was, naturally, now super-protective. She was attending counselling and was "managing", but was frequently shaky, angry, distressed and sad. Everyone (her words) said she "should be getting over it by now", that "she should be able to put it behind her", that "she should be able to forget it and get on with her life". She said she had to leave my class because the concept of chronic sorrow was the first thing she had heard that made any sense to her.
(The references to all works cited in "Lecture" may be found at the end of my paper on the Web, with the exception of the following: Irvin, N., Kennell, J. & Klaus, M. (1982). Caring for the parents of an infant with a congenital malformation. In M. Klaus & J. Kennell, Parent-infant bonding, (2nd ed.) (pp 227-258). St. Louis: Mosby.)
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