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Definition

Parents who are presented with the diagnosis of disability at birth or in the early life of their child, begin a learning process that involves coming to terms with the "loss" of the normal child and the normal parenting role they had expected.

Primary health care professionals need to understand the nature of the loss and its impact on family life and future parenting. The time of diagnosis is a confusing and emotionally overwhelming period, which often involves high levels of anxiety. Parents will never be "ready" to hear traumatic news about their children, and opinions of family members, friends, acquaintances and media reports often further confuse them. Accurate and comprehensive information about the nature of the disability should be made available as soon as possible, including positive and negative outcomes of the impairment and likely disability.

Preferably parents should be forewarned that they will be hearing bad news. Information should be supported by reading material, and contacts for further support. Professionals should expect that parents will not digest all of the information, but should ask the parents how much detail they would prefer. This has as much to do with parents' need to defend against the overwhelming nature of the information as it has to do with the steep learning curve that accompanies new and complex information. Professionals need to be aware that often the composure of parents masks a quiet desperation and an urgent need to gain control of the situation. In keeping this composure, parents may feel unable to ask for further explanation at the time of diagnosis.

Following this initial crisis of discovery there is often a slow, unfolding, learning process about the significance of diagnosis which affects professionals and parents in different ways. An understanding of the grieving process in relation to diagnosing a disability is helpful in all interactions with parents because professionals may be:

• The bearers of bad news.
• Required to explain and impart relevant information.
• Involved with the ongoing and unfolding nature of the loss.
• Involved in making assessments during critical transition stages for the child (eg. starting pre-school or school).
• Asked to assist parents in decision-making.
• Affected by their own grief response to the child's condition.
• An advocate for children in recognition of their abilities and accessing appropriate services.

Perspectives About Grieving in Relation to Disability

Stage Theory of Grieving in Relation to Death and Dying

In the past these stages of grieving (Kubler-Ross 1969) although not viewed as linear, have generally been presented as relevant to the grieving process of parents of a child with a disability as they move from one stage to the next and finally towards acceptance of their child's condition.

In this adaptation, acceptance has been considered to be reached when the parent presents a realistic view of their child's disability both in type and degree. Unresolved grief has in turn been interpreted as a lack of acceptance of the child's disability. However, Kubler-Ross' model is an oversimplification of the complicated grief experience that accompanies parenting a child with disability.

The following provide an outline of a number of more recent perspectives of grieving and their relation to parenting a child with disability.

Attachment Theory

In observing the behaviour of infants who were separated from their mothers, Bowlby (1960) observed that broken attachment is characterised by angry protest, disorganisation and despair leading eventually to reorganisation when the lost person or object fails to return. Grieving, therefore, "is a form of attachment behaviour and separation anxiety". In the case of disability, the attachment to an "expected" child is endangered and must be reworked in light of this loss. While disappointment accompanies this process, parents are also sometimes forced to rework long held negative and confronting beliefs and attitudes about disability. Guilt may accompany these normal feelings. Coupled with the child's continuing vulnerability, parents will often intensify their attachment to the child. Parents might be viewed as experiencing various intensities of anxiety as their child continues to be threatened and vulnerable.

Cognitive and Phenomenological Perspectives

Other perspectives that might be helpful in understanding grief and loss are related to questions of meaning and adaptation to changed circumstances.

Marris (1974) argues that a major loss or bereavement "shatters the structure of meaning" and "breaks the thread of continuity which makes the world intelligible". Grieving can be best understood as a response to loss of meaning. In the case of disability, parents are forced to embark on a dual process of learning a new world while simultaneously building purpose and meaning around their child's disability. This process represents an ongoing task with greater and lesser challenges throughout their child's lifespan.

Grief Work

In grief work it is thought that mourning may not proceed until there is a clear image of what is lost. The psychoanalytical approach suggests that in order to facilitate the process parents require an opportunity to review their thoughts and feelings about the "wished-for child". For parents of children with disability, the loss continues to evolve; the grief work is necessarily more complex and ongoing.

Worden (1991) outlines a range of thoughts, feelings, behaviours and physical symptoms associated with grieving. These experiences may be useful to consider as typical responses that might accompany grieving. In the case of disability, it is conceivable that parents will experience various intensities and permutations throughout their lifespan, including:

• Thoughts, such as disbelief, confusion, preoccupation.
• Feelings, such as anxiety and fear, sadness, anger, guilt, inadequacy, hurt, relief, loneliness.
• Behaviours, such as sleep disturbances, appetite disturbances, absent-minded behaviour, social withdrawal, dreams, avoiding reminders, searching and calling out, restless overactivity, crying.
• Physical symptoms, such as hollowness in the stomach, tightness in the chest, tightness in the throat, over- sensitivity to noise, a sense of depersonalisation, lack of energy.

Grief and Parenting a Child with Disability

The birth of a child with a disability may well challenge parents and extended family members who rail against the unfairness of it all, wonder how this could have happened to them and even ask why they are being punished. Those who wish to assist the family of a child with a disability need to understand what the experience means to its various members and not presume to know. Several authors have focused specifically on grieving as it affects parents of children with disability.

Chronic Sorrow

Olshansky (1962) challenged the relevance of bereavement-related grief in relation to its relevance to a child with a disability and introduced the notion of chronic sorrow. Olshansky's view is that parents need permission to grieve from time to time if that is how they feel. This sorrow can peak at critical times such as entry to kindergarten or birthdays, or any time when the parent is starkly reminded of the child's disability. Most parents with a disabled child suffer chronic sorrow throughout their lives. The intensity of this sorrow varies from time to time, from situation to situation, and from one family member to another. Some show their sorrow clearly, others attempt to conceal it as these feelings can be very difficult to share.

The sentence "The child's parents haven't yet accepted their son/daughter's disability" is heard and used many times by teachers, social workers, doctors and others. Olshansky suggests that when parents are asked to accept their child's disability it is not clear what they are being asked to do. The great emphasis professionals place on "acceptance" might suggest to the parents that they should perceive their child from the point of view of the professional helper not as "their" child. In this case, it is useful to differentiate between emotional and intellectual acceptance.

Another question professionals may ask is: "Why doesn't this parent want to have that assessment done?" It is often assumed that the parent is reluctant to move forward. Here, the notion of acceptance recurs again. Alternatively, from a grieving perspective, the response may indicate that the parent is overwhelmed and is trying to negotiate the pace at which they learn further about their child's disability. In many instances, where the child is not endangered, this may be considered emotionally adaptive.

The professional who sees chronic sorrow as a normal psychological reaction will support the parent over a long period of time in which the parent may adjust feelings and organise internal and external resources to meet their own and the child's needs. Rather than working inexorably towards the acceptance of the disability, the immediate goal is to increase the parent's level of comfort in living with the child and coping with the added difficulties this may present from day to day.

Adjustment and Readjustment

Helen Featherstone (1980) in her book A Difference in the Family refers to acceptance as the "emotional promised land". She suggests it may be more helpful to talk in terms of adjustment and readjustment as age and circumstances alter. She writes: "disability is never as clear cut as death. Grief usually mingles with confusion and uncertainty. As parents learn more, either through their own research or through professional consultation the picture changes. Too often earlier professional predictions are contradicted. Not knowing what fate to mourn, parents face a thousand alternative scenarios. Parents looking for a diagnosis are frightened and immensely vulnerable. They may have already suffered days, months, even years of agonising doubt. They stand exposed and powerless before the 'experts'. Indifference, condescension, or equivocation wound them deeply."

Unresolved Grief

In Australia, a recent study by Elizabeth Bruce (1991) and others has looked more fully at the concepts of grieving in relation to the parenting role. Bruce found that unresolved grief is better understood as a normal response rather than a failure or inadequacy on the part of the parent. That is, if we look at the complicated nature of loss, its changing perspectives over time, the problem of unresolved grief may not lie with the parent but in the constantly changing nature of the loss.

The nature of parental grief will be influenced by:

• The social context which provides images of normality.
• The disability and its manifestations.
• The passage of time.

When the child's disability is diagnosed, the parent is forced to embark on two processes:

• Learning exactly what has been lost.
• The process of grieving.

In the past the literature has focused on the initial reactions to the impact of diagnosis, rather than the lifelong nature of loss. It is noted that as the child's uncertain future unfolds, the very maturation process can present further fear of the future, along with concerns about provision for the child when the parents are no longer able to provide care.

Implications of the Range of Theories in Relation to Disability:

Some Key Points

What have parents of a child with a disability lost?

• The expected perfect child.
• The normal parenting role and its impact over time.
• The possible loss of an independent adult.

A further source of grief for the parent is the child's own sense of loss.

The isolation that families of a disabled child experience compounds their grief.

The stage theory of grief provides unrealistic tasks for parents of a disabled child.

• Parents have a wide range of feelings and reactions, e.g. anger, jealousy, frustration, irritability, sleeplessness, resentment, hostility, abandonment, embarrassment, fear, blame and marital conflict. Although aspects of these feelings reflect a grieving response, they can also represent a realistic response to the lack of concrete information about their child's future, the lack of appropriate and responsive services, and the inappropriate reaction of family and social networks to the loss.
• Parents describe the task of coping with a disabled child as surviving each day and holding on to their grief until later, or perhaps not being able to address it at all.

Summary of the Current Thinking About Grief and Loss

• Grieving is a normal process in response to significant loss.
• People need permission to grieve and to know their feelings are valid and normal.
• Coping with loss is ongoing throughout the life cycle of the family.
• Acceptance of the disability is an outmoded term and seen as an unrealistic goal for parents.
• The notion of adjustment should be differentiated into intellectual and emotional aspects.
• Time of diagnosis is not necessarily the only acute period of grieving. Acute periods can occur throughout the child's life.
• Concern for the child's future in adulthood is often present at a very early age.
• With any minor disorder or developmental delay, the reality of the child's condition may not be apparent for many years.
• Difficult feelings of anger, envy, jealousy, and denial, etc. are part of the grieving process and professionals have a role in helping parents work through these feelings, even when they are projected towards them.
• Grieving can be experienced by family members in quite different ways, e.g. one member distances from information while the other is keen to embrace all the information.
• Grief may be triggered by parent's internal mood states, which are not predictable, eg. memories of their own childhood, music that creates nostalgia.
• Involvement of professionals should be positive for families, who sometimes feel they have no choice in the professional's involvement in their lives.

Implications For Health Professionals in Their Practice

Recurring Grief

Professionals may overestimate the impact of the initial crisis of diagnosis and underestimate the later recurrent grief. A sudden image of the 'normal child' years later may trigger a grieving response. Parents may feel that they are not to mourn after the initial period but to become heroic dedicated care givers. Parents comment that people constantly remark "how wonderful you are" or "I would never have coped as well as you have". They often have to perform the role of supporting wider family members, which means their own painful feelings are ignored or left on hold.

Gender and Cultural Differences

These differences will be a determinant in an individual's response to grief. Ethnic disability services have an important contribution to make in assisting professionals understand the wide range of reactions to loss in specific cultures. The effects on various members of the family are often misunderstood. Male and female responses may be quite different and marital relationships can be strained if there is an expectation that partners must grieve together. The mother usually has more opportunities to talk to service providers, whereas the father may be left behind, keeping his feelings on hold. Parents need to be informed about how grieving responses vary for each individual and that siblings' needs must not be ignored, both in their experience of the disability and their changed family dynamics.

Parents and Professional Partnerships

Parents need professionals who can remain supportive over a long period. It is never enough to simply reassure parents that their grief is 'normal' and leave it at that. The grief might be normal but it is also painful and challenging. Support and understanding and opportunities to 'work through' the grief and adjustments are still needed. To pronounce the experience as normal is often dismissive and an abdication of professional responsibility.

Self-help groups are of enormous value and offer a special understanding and credibility that professionals who are not themselves parents of a child with a disability can never provide. Research in this area indicates that a partnership between professionals and self-help groups is even more effective than either in isolation.

Professionals need to be cautious in applying theories of grieving as fact. Suggesting parents need formal counselling might not be appropriate. Often what is needed is a trusting, stable relationship that offers choices in support and an understanding about change and loss reactions when the individuals are ready. Being able to support parents when they are angry, blaming, fearful, depressed or fighting each other is essential to the relationship of partnership with the family. Within this partnership, professionals often experience the anger and blame of parents towards them and their services. Being able to recognise these emotions and continue to work through the difficult times is a key example of how grief issues can impact on this partnership.

Staff Grieve Too

Members of the helping professions are not immune to grief. Exposure to a high volume of multiple and chronic loss situations can leave the professional feeling either helpless and overwhelmed, or so well defended as to seem callous and switched-off in dealing with families. Education about loss and grief, combined with communication skills training and an adequate system of support, debriefing and professional supervision, is essential for maintenance of high-quality patient, family and staff care. This approach has been successfully modelled in palliative care settings, but has barely begun to be developed in the acute health arena or disability related services.

The Parent-Child Relationship

Families may still experience many joys and satisfaction with their child and his or her progress, and love them intensely, even while grieving. The level of attachment of parent to their child is intense and complex and can exist despite severe disability, limited life expectancy and the burden of care the disability imposes. In fact, parents can react strongly to any negativity in the way their child is described.

Parents will feel a great deal of urgency to understand and cope with the child's condition. Bruce et al (1991) found that there were no significant differences in reports of happiness in parenting between the disabled and non-disabled group over the previous year, indicating the capacity for a satisfying experience of parenting any child. This conclusion is also indicative of the intense level of attachment of many parents.

Common Occasions of Stress For Families of a Child with a Disability, including Key Transition Times

• The time of diagnosis of the disability or the time of acquiring the disability.
• The time of discovery of additional disabilities e.g. hearing loss, epilepsy, diabetes.
• Pre-school placement and school placement.
• Puberty, sexual expression, adolescence.
• When the child becomes aware of his/her disability/differences.
• School leaving age and vocational or future work decisions.
• Birthdays, Mother's Day, Father's Day, Christmas Day.
• During a subsequent pregnancy or parental illness.
• When siblings marry or establishment of responsibility of siblings in future care arrangements.
• Permanent care application, waiting list and offer of placement.
• Ageing of parents and death of a prime care giver.

Conclusion

For parents the diagnosis of disability in a child is a dreaded event. Its short and long-term effects shadow the parenting experience. The changes in hopes and expectations, the grief of parents, siblings and family can be seen to parallel the life of the child with disability. Depending on the presence and severity of the disability, this same child is likely to experience intermittent bouts of grief in varying intensity. Against this background, and given the constant stresses, parents are likely to be overwhelmed at various points. Family relationships can become strained, sometimes leading to parental separation and divorce. However, knowledge of normal grief reactions that recur across the lifespan of the family, and opportunities for expression of grief will lead to healthier adjustment and adaptation for families and carers.

The intense level of attachment of many parents to their children, the hard-fought individual achievements, and the improving level of integration into community life are also examples of parents' capacity for a rich and satisfying experience of parenting children with a disability.

References

Bowlby, J. Grief and mourning in infancy and early childhood. In. R. S. Eucla et. Al. (Eds.) The Psychoanalytic Study of the Child, Vol XV, New York: International Press. 1960.

Bruce, E. Grief and the parents of a child with an intellectual disability: Lifetime implications for Health and Wellbeing Research project. 1991.

Featherstone, H. A difference in the family: Life with a disabled child. New York: Basic Books, 1980.

Kubler-Ross, E. On Death and Dying New York: MacMillan Publishing Co, 1969.

Marris, P. Loss and Change, Routledge Kegan Paul. 1974.

Olshansky, S. Chronic Sorrow: a response to having a mentally defective child .Social Casework, Vol XLIII, No. 4, April 1962.

Worden, W. Grief Counselling and Grief Therapy. New York: Springer Publishing Co. 1991.

Written with expert opinion from Irene Renzenbrink, Department of Social Work, Royal Children's Hospital, and Dr. Elizabeth Bruce, Psychologist in private practice.

For Further Information:

Formal Types of Grief Support and Education Available to Families

Centre for Grief Education, McCulloch House, Monash Medical Centre Ph. (03) 9545 6377.
National Association for Loss And Grief, Ph. (03) 9351 0358
Sisters of Charity Outreach Centre, Grief Counselling and Support Service. Ph. (03) 9415 1522.
Grief counsellors in private practice.

Parent Support Groups in the Disability Field

Written and Developed by the Centre for Community Child Health & Ambulatory Paediatrics, Royal Children's Hospital, Melbourne for the Victorian Government Department of Human Services.

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