By Annie Cantwell-Bartl MAPS, Honorary Research Fellow, Royal Children's Hospital, Melbourne and psychologist in private practice

The parents of children who have a disability live with many difficult issues and frequently experience trauma, loss and stress. In spite of these many difficult experiences, parents are also adaptive and resilient and are frequently more focused on what matters in living. In order to assist parents to develop resilience there is a need for psychologists to understand the experiences of these parents. This understanding can then manifest in the provision of support and counselling, and advocacy for appropriate social policies and services for these parents.

Parents may experience trauma

Contemporary research on parents of children with disabilities has found that parents frequently experience traumatic stress and that traumatic symptoms can endure (see, for example, O'Neill, 2005). Parents may experience trauma at various times, such as at the time of diagnosis or in response to treatment, or when a child is hospitalised, particularly if the child has to spend long periods in hospital.

Some parents are more susceptible to traumatic stress reactions than others, particularly where there are multiple concurrent stressors, as stressors weaken resources. Other causes of susceptibility include a parent's own difficult childhood experiences or previous traumas. Studies have found that mothers are particularly prone to trauma (Landolt et al., 2005), but all parents are susceptible to traumatic reactions if a stressor is intense. Some parents experience a number of traumatic incidents, for example, at the time of the diagnosis immediately after birth, followed by surgery, then intensive care, and then life-threatening complications. Parents may have so much with which to contend at this time that their own self-care is bypassed.

Parents live with loss

Where there is trauma there is also loss, although the literature tends to separate these two phenomena. Parents of children with a disability are likely to experience many concurrent losses. The first loss might be the diagnosis, which shatters the parents' worldview that they will have a normal child. Parents need information in a staged process so that they can start to assimilate the news, and need to feel that the professional who delivers the news is sensitive and supportive (Cantwell-Bartl & Tibballs, 2008). Grieving is an ongoing feature of raising a child with a disability and tends to be far more intense for mothers than fathers (Bruce, 2000), with fathers tending to express their grief in concrete terms. Parents experience grief over time and often have intense wishing for what might have been.

As well as the grief of diagnosis, parents of children with a disability are likely to experience many secondary losses which continue to unfold. For this reason the loss experienced by parents has been termed cumulative or non-finite loss (Bruce & Schultz, 2001). For example, parents could grieve over the child's lack of achievement of developmental, academic and social markers, and ongoing stigmatisation. Parents are likely to also grieve for themselves and the lost opportunities for personal growth and achievement, as every aspect of their life may be threatened and changed. They are more likely to be socially isolated as friendships change, and extended family can withdraw in response to the child's disability.

The grief of the parents is complex. The literature on loss tends to focus upon bereavement, but bereavement is centred on a single loss. Although stage models of grief are still employed, perhaps a more appropriate model is the Dual Process Model (Stroebe & Schut, 2001) which, in contrast to a staged response, is open-ended and allows for people to swing between confrontation and avoidance of the loss in order to maintain stability. Denial may be appropriate, for example, a belief that a child may walk one day may give a parent hope and extra resources, and allow time for the parent to adapt to a devastating diagnosis. Parents need to be able to speak openly about their experiences, and to speak of their sorrow and other intense feelings such as guilt, shame, disappointment or anger.

Parents live with stress

Parents of children with disabilities juggle many stressors, such as multiple health visits and consultations with educational specialists, and may be dealing with other family stressors including sibling difficulties. Siblings may also experience stress and their needs may go unnoticed, or they may have challenging behaviours as a response to their feelings of sorrow or anger. Parents are likely to be confronted with limited support resources in the community and long waiting lists, or they may encounter unsympathetic health professionals that they have to struggle with to access resources. As well, many families of children with a disability are economically strained as mothers may not be able to return to work and there may be extra expenses in supporting the child.

Many children with disabilities have challenging behavioural disturbances or complex physical needs which can place an enormous stress on families. Some children with disabilities also have psychological maladjustments as a consequence of their disability or treatment. Health professionals often do not understand the complexity of these families' experiences and the huge demands involved in supporting a child with a serious disability.

Parents usually adapt and develop many resources

In spite of the many difficulties associated with caring for a child with a disability, parents often adapt and develop a great deal of resilience in response to their care demands. Many parents develop skills and strategies that they never could have imagined if their child did not have a disability. It is common for parents to say that they have become more compassionate, and some parents become more focused upon what gives meaning in living. Most parents care for their children faithfully and with great commitment, and speak of the many joys in this work despite the difficulties. These trends towards adaptive responses are consistent with the phenomenon of ‘posttraumatic growth' (Tedeschi & Calhoun, 2004). This is defined as the experience where people have positive impacts after a negative event due to strengthened perceptions about self and others and the meaning of events.

How psychologists can assist

Parents need to feel supported and to have opportunities to tell their stories without censure, so a psychologist who is empathic can be deeply therapeutic. Parents may also need to speak of their hardship and their ambivalent feelings towards their child, in the awareness that there will be few people with whom these ‘secrets' can be shared. Parents become adept at pushing down their needs because the child's needs are dominant and they fear nobody wants to hear about their own experiences. Psychologists can be mindful that parents may experience both traumatic symptoms and grief in response to many losses. Empathic listening can also reduce the parents' traumatic arousal and assist parents to feel less isolated in their loss and stress. It is worthwhile making recommendations that a psychologist be present to support parents when bad news such as a diagnosis or poor prognosis is delivered. In addition to individual assistance, parents often benefit from longer-term group sessions with other similarly affected parents.

Parents may also be supported in noting their resources, their capacities and their adaptability in caring for their child. Many parents need to be acknowledged for the courage and loving that is manifest in the care of their child.

Psychologists also need to be mindful that parents need advocacy from health professionals who understand their situation because the barriers and the difficulties in negotiating support structures can be exhausting. Psychologists should also be aware of the wider inadequate systemic supports for parents and to advocate for more generous social and financial resources for these parents.

Understanding the experience of parents of children with a disability 
  • Parents need time to tell their stories and to have their feelings validated, as these are often suppressed in order to maintain the daily rhythm of care.
  • Fathers' and mothers' grief may manifest differently. Fathers may find it harder to speak of their feelings and may need practical strategies where they feel in control, whereas mothers may need to talk of their feelings.
  • Grief is likely to be complex involving many secondary losses.
  • Parents may experience trauma as well as grief.
  • Other people's reactions to the child with the disability may be a source of secondary loss and trauma.
  • Parents may need advocacy.
  • Parents are likely to have developed many resources and resilience. 

 

The author can be contacted at annie.cantwell-bartl@cryptic.rch.unimelb.edu.au.

References

Bruce, E. J. (2000). Grief, trauma and parenting children with disability: cycles of disenfranchisement. Grief Matters: The Australian Journal of Grief and Bereavement, 13(2), 27-31.

Bruce, E. J., & Schultz, C. L. (2001). Nonfinite Loss and Grief. Baltimore: Paul H. Brookes.

Cantwell-Bartl, A. M., & Tibballs, J. (2008). Place, age, and mode of death of infants and children with hypoplastic left heart syndrome: implications for medical counselling, psychological counselling, and palliative care. Journal of Palliative Care, 24(2), 76-84.

Landolt, M. A., Vollrath, M., Laimbacher, J., Gnehm, H. E., & Sennhauser, F. H. (2005). Prospective study of posttraumatic stress disorder in parents of children with newly diagnosed type 1 diabetes. Journal of the American Academy of Child and Adolescent Psychiatry, 44(7), 682-9.

Landolt, M. A., Vollrath, V., Ribi, M., Gnehm, H. E., & Sennhauser, F. H. (2003). Incidence and associations of parental and child posttraumatic stress symptoms in pediatric patients. Journal of Child Psychology and Psychiatry and Allied Disciplines, 44(8), 1199-1207.

O'Neill, M. M. (2005). Investigation of the prevalence of posttraumatic stress symptomology in parents of children with disabilities. Kentucky, US: Lexington.

Stroebe, M. S., & Schut, H. (2001). Meaning making in the dual process model of coping with bereavement. In R. A. Neimeyer and R. A. E. Neimeyer (Eds.), Meaning reconstruction and the experience of loss (pp. 55-73). Washington DC: American Psychological Association.

Tedeschi, R. G., & Calhoun, L. G. (2004). Posttraumatic growth: conceptual foundations and empirical evidence. Psychological Inquiry, 15(1), 1-18.

InPsych December 2009