Mothers of Children With Autism Spectrum Disorders: Oral Histories of Inner Strength

Saturday, 28 October 2017

Jennifer Steinberg, PhD
Gayle Roux, PhD
College of Nursing and Professional Disciplines, University of North Dakota, Grand Forks, ND, USA

Purpose: The purpose of this descriptive study was to co-create and analyze oral histories of mothers of children with ASD. The research questions to be answered were: (a) What are the experiences of mothers of children with ASD? and (b) How do the experiences of mothers of children with ASD inform the Theory of Inner Strength in Women?

Background: Mothers of children with ASD are vital members of the care team for their children and families overall. For many years, the bulk of literature focused on difficulties encountered by mothers of children with ASD, including issues related to behaviors of children diagnosed with ASD, mothers’ psychological distress, caregiver burden, and the stress and difficulty of obtaining the correct diagnosis. Issues related to challenging behaviors of children diagnosed with ASD include: sensory processing dysfunction (Tseng, Fu, Cermak, Lu, & Shieh, 2011), anxiety and phobias (Mayes et al., 2013), and insomnia (Kotagal & Broomall, 2012). Mothers’ psychological distress is hypothesized to he caused by: parenting stress related to the challenging behaviors exhibited by their children (Estes et al., 2013) or a predisposition to psychopathologies (Hodge, Hoffman, & Sweeney, 2011, Ingersoll & Hambrick, 2011). Later, literature began to focus on the mothers’ ability to cope and adapt to their lives as caregivers for their children with ASD. Some of the adaptations to mothering a child with ASD from the literature have included: (a) changes to employment or career trajectory (Baker & Drapela, 2010); (b) changes to socialization patterns (Hock, Timm, & Ramisch, 2012, Lilley, 2011); and (c) reliance on family or friends for instrumental and emotional supports (Benson, 2012).

The Theory of Inner Strength in Women (Dingley & Roux, 2014) is a gender-specific, descriptive, middle-range nursing theory which moves beyond resilience to describe the processes which occur in women as they move through challenging life events. The theory includes four dimensions: (a) engagement, (b) connectedness, (c) anguish and searching, and (d) movement, as well as an outcome: living a new normal.

Method: Ten oral history interviews were conducted with narrators living in the Upper Midwest at the time of their interview. Ages of the mothers ranged from 34 – 63, and ages of their children ranged from 10 – 36. Oral history was the method selected because the interviews could be archived and entered into the historical record following data analysis, thus preserving qualitative nursing data for use by future qualified researchers. Each interview was reviewed and validated for accuracy by the individual narrator. A release was signed for historical archival of the interview following data analysis. Narrators had the opportunity to withdraw their interviews from the study at any time prior to archival of interviews.

NVivo11 Plus was used for data coding and thematic analysis. Kvale & Brinkman’s (2008) 5-step method was used for the thematic analysis: (1) listen to recorded interviews and make notes about first impressions; (2) label relevant phenomena to begin to code the interviews; (3) create themes by bringing several codes together; (4) label themes and describe connections between them; (5) draw figures to represent the data, such as a thematic map.

Findings: The chronology of a mother’s experience of parenting a child with ASD followed a pattern. The pattern which emerged through analysis of the interviews collected included three distinct phases: In the Beginning, which includes the pre-diagnostic and diagnostic periods;  Everyday ASD, which includes the phase during which the mother lives with her child or provides for her child’s day-to-day needs, either materially or emotionally; and Afterward, which is the period following a crisis or a critical process which causes the mother to grow in inner strength in a way that she is able to look at the phase of Everyday ASD in a retrospective manner. A crisis could include: the child’s life-threatening event or a mother having to make a conscious decision to mother and support the child through an arrest or institutionalization when a spouse was not supportive. A critical process could include: a successful application for guardianship or making posthumous arrangements for the care of an adult child.

Discussion: The ten oral history interviews of mothers of children with ASD contained all four dimensions of the Theory of Inner Strength in Women (Dingley & Roux, 2014), as well as the outcome of living a new normal. The themes that emerged from the analysis of the oral histories could be linked with dimensions of the theoretical model, including the two themes comprising the Afterward phase of the mother’s chronology: All Worth It and Letting Go, which moved beyond the existing theoretical model for the Theory of Inner Strength in Women.

Conclusions: Implications for nursing include a more complete understanding of the lived experiences of mothers of children with ASD living in a resource-rich environment. The findings of this study can be used to further inform practice in a variety of practice settings including, psychiatric mental health, schools, public health, and pediatrics. Recommendations for further research include further testing for adaptation of the Inner Strength Questionnaire (Roux, Lewis, Younger & Dingley, 2003) for use with caregivers of children with ASD and other disabilities. Another area for further qualitative studies to understand the presence and readiness for growth of inner strength in pregnant women who are making decisions about undergoing fetal surgeries to minimize the impact of pregnancy complications and birth defects.