I write this commentary in response to “The need to know: The Information Needs of Parents of Infants with an Intellectual Disability —a Qualitative Study” by Douglas, Redley & Ottmann (2017).
Providing appropriate information to families and patients is crucial in healthcare. As described in the article by Douglas et al. (2017), “the lack of timely access to knowledgeable and responsive health professionals has been previously recognised as a barrier to achieving equitable access to health care and optimal health outcomes amongst people with intellectual disabilities” (Krahn, Hammond & Turner 2006). Knowledgeable and responsive health professionals should be able to provide the right information at the right time.
However, what is considerably overlooked in this article is the individual needs of each family. When reading the parents’ (participants) quotes, you can clearly see that all parents did not have the same needs. What is apparent is a crying need to be heard and to have an individualized response according to their needs and specific to their child. This is illustrated in the following quote by Anne-Marie “I needed that to know that my child wasn’t going to die” (Douglas et al., 2017). Whereas some other parents wanted to have medical information in laymen’s terms, some others wanted to know experiences from other parents with children with the same disability.
We see further example of this when the researchers try to generalize their findings by including children with not only Down Syndrome, but cerebral palsy as well. However, in doing so, they assume that all children with cerebral palsy have intellectual disability as this article pertains to infants with such disability. When in reality, only 50% of children affected by cerebral palsy have intellectual disability (Glader & Barkoudah 2017). Also, by focusing on a pre-determined way of delivering information, they focus on deficits associated with each disease and may cause health professionals to overlook each infants’ individual strengths despite the disease.
This article provides with a clear-cut protocol about what knowledge parents require, when they require it and how to refer parents to other professionals. I do not want to minimize the importance of the need for accurate timely information. The knowledge provided by this article can be very useful for health professionals to know and to guide them in increasing their own knowledge, however it brings us back into a traditional medical model of paternalistic direction instead of a collaborative partnership recognizing the uniqueness of each family (Gottlieb 2013).
Tatiana Kudzman, RN, MScA (c)
McGill Universtity, Montreal, Canada
Douglas, T., Redley, B., Redley, B., & Ottmann, G. (2017) The need to know: The information needs of parents of infants with an intellectual disabilitya qualitative study. Journal of Advanced Nursing, 73(11), 2600-2608.
Glader, L. & Barkoudah, E. (2017) Clinical features and classification of cerebral palsy. In C. Armsby (Ed.). Retrieved 1 November 2017 from: https://www.uptodate.com/contents/clinical-features-and-classification-of-cerebral-palsy
Gottlieb, L. N. (2013). Strengths-Based Nursing Care: Health and healing for person and family.
New York, New York: Springer Publishing Co.
Krahn, G. L., Hammond, L., & Turner, A. (2006). A cascade of disparities: Health and health care access for people with intellectual disabilities. MRDD Mental Retardation and Developmental Disabilities Research Reviews, 12(1), 70-82.