Monday, 20 November 2017

Response to Commentary on Douglas T, Redley B, Ottmann G. The need to know: The information needs of parents of infants with an intellectual disability—a qualitative study.

Response to Commentary on Douglas T, Redley B, Ottmann G. The need to know: The information needs of parents of infants with an intellectual disability—a qualitative study. Journal of Advanced Nursing 2017; 73:2600–2608

Tracy Douglas

Bernice Redley
Goetz Ottmann

The commentary by Ms Kudzman on on Douglas, Redley & Ottmann  (2017) highlights some important points for how the findings of our research can be translated into practice.  The parent participants in our research identified information-seeking was a significant part of them establishing their role as the parent of an infant with an intellectual disability; but this was not well supported by the health professionals they encountered.  As reported in our earlier paper outlining the broader study findings (Douglas, Redley & Ottman 2016), information needs were one of three themes describing the support needs of parents caring for a child with an intellectual disability in the first year of life.  In this subsequent paper, we reported sub-analyses that conceptualised parents’ identified information needs into three knowledge types based on patterns that emerged in analyses of parents’ narratives.  Such findings can provide a framework to assist health professionals to begin to support parents to access the information they require at the ideal time.

Ms Kudzman quite rightly points out the need for information to be tailored to the individual needs of each family and their child.  Our research findings provide guidance for clinicians to do this.  The theme “Information about the infant’s specific needs” (Douglas, Redley & Ottmann 2017) captures this requirement for individualisation.  However, in addition, our research found parents also needed “Information about their infant’s condition”, often as a prerequisite to being able to engage in meaningful information-seeking specific to their individual needs and circumstances.  When placed into the context of the broader study findings (Douglas, Redley & Ottmann 2016), the need for information about the child’s condition was closely linked to parents’ emotional needs, particularly early in the parent journey.  Our findings suggest that providing general information about their child’s condition, whatever it may be, is needed in the first instance for reassurance, so parents can begin to assimilate what has happened, before they can identify the specific knowledge they may need to better understand what this means for their child and family.  Understanding common patterns in the types of information parents may need, and when this may occur, can provide health professionals with a starting point to engage with parents about the care of their child, and lay the foundations to appropriately tailor and individualise subsequent care and information.

It is not the claim of this qualitative descriptive study to explain every circumstance, but to use the data to identify common patterns that may be transferable to other situations.  Qualitative descriptive research aims to understand and describe in everyday language the experiences of the research participants (Sullivan-Bolyai, Bova & Harper 2005).  The strength of this methodology lies in its facilitation of new and rich insights into the experiences of the participants, and its tenet to present this data in a way that remains true to participants’ perspectives (Sandelowski 2000).  It has further been argued that qualitative description lends itself to the identification of factors that can improve the utilisation of health services because the findings are based on the perspectives of the people who use those services (Sullivan-Bolyai, Bova & Harper 2005).  Consistent with the qualitative descriptive methodology, our research findings stay close to the data, telling parents’ stories as told by them.  The identification of common patterns and themes across the range of parents suggests there are some needs that are shared regardless of the specific conditions or circumstances (Douglas, Redley & Ottmann 2016), and these are potentially transferable to other parents of children with a wide range of disabilities, as captured in the participant group.

Further, every parent involved in our research self-selected based on the invitation for parents of children with intellectual disabilities to participate.  The requirement for participation was that the parents knew there were signs that the infant had an intellectual disability and that parents could share their stories about seeking support for this during the first year of the child’s life (Douglas, Redley & Ottmann 2016).  The voluntary participation of parents whose infant had been diagnosed with cerebral palsy in no way implies that all people with cerebral palsy have an intellectual disability.  Rather, the inclusion of these parents, as well as the parent whose child did not have a diagnosis at all, supports our research finding that there are some common support and information needs across a range of parent circumstances (Douglas, Redley & Ottmann 2016).  In fact, a maximum variation sample that aims to capture a wide range of experiences is important to identify common patterns across the diversity of conditions experienced by the families health professionals care for in the course of their work, and these patterns are even more significant given they have emerged from a heterogeneous cohort (Palinkas et al. 2015).  Identification of these common needs across this varied sample can assist health professionals to understand the general patterns in the types of supports they need to provide when caring for a wide range of parents and their infants who may have a range of conditions leading to intellectual disability.  This is particularly important because, as demonstrated in our research, failure to meet these needs can have a direct impact on how well parents are able to coordinate the care their infants require, which in turn can impact on the infant’s health and developmental outcomes (Douglas, Redley & Ottmann 2017; Intellectual Disability Rights Service 2009).

Every parent in our research described the challenges they experienced trying to access accurate and reliable information about their child’s condition, their child’s unique needs and the supports and services available to them.  In response to this, the important role of health professionals both directly providing information and recommending quality information sources (Douglas, Redley & Ottmann 2017) enables parents to access the information they require when they require it.  The articulation of the three types of knowledge provide a starting point to assist health professionals who are often unknowledgeable about disability, to understand how they can better support the nuanced, information-seeking of parents so they are empowered to take charge of their own child’s care as they desire.

Tracy Douglas & Bernice Redley, School of Nursing and Midwifery
Dr Goetz Ottmann, School of Health and Social Development
Deakin University
221 Burwood Highway
Burwood, Victoria 3125 Australia



Douglas T, Redley B & Ottmann G (2016) The first year: the support needs of parents caring for a child with an intellectual disabilityJournal of Advanced Nursing 72(11), 2738-2749.  doi: 10.1111/jan.1305

Douglas, T, Redley, B & Ottmann, G (2017) The need to know: The information needs of parents of infants with an intellectual disability: a qualitative studyJournal of Advanced Nursing 73(11), 2600-2608. https://doi .org/10.1111/jan.13321

Intellectual Disability Rights Service (2009) Introduction to intellectual disability.  Retrieved from on 7 November 2017.

Palinkas L, Horwitz S, Green C, Widsom J, Duan N & Hoagwood K (2015) Purposeful sampling for qualitative data collection and analysis in mixed method implementation researchAdministration and Policy in Mental Health and Mental Health Services Research 42(5), 533-544. doi: 10.1007/s10488-013-0528-y

Sandelowski M (2000) Whatever happened to qualitative description? Research in Nursing & Health 23(4), 334-340.

Sullivan-Bolyai S, Bova C & Harper D (2005) Developing and refining interventions in persons with health disparities: the use of qualitative descriptionNursing Outlook 53(3), 127-133.

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