When resources get sparse: A longitudinal, qualitative study of emotions, coping and resource-creation when parenting a young child with severe disabilities

Abstract

Parents who realize that their newborn child is severely disabled often experience severe physical and emotional stress. Parental well-being is essential for the care-taking of the child. It is yet not known why some cope well and others do not. The aim of this study was to explore how parents coped with parenting a disabled child and how they maintained their energy and personal resources. We explored parents' experiences, coping and resources over a two-year period after their child was diagnosed with a severely disabling condition using a qualitative, longitudinal approach. Findings were interpreted in a theoretical framework of Lazarus and Folkman's studies on coping and Fredrickson's broaden-and-build theory of positive emotions, as well as theories of positive illusions and benefit finding during severe adversity. We found that parents continually created and sustained their personal resources through positive cognitive reappraisals of their circumstances, the consequences of those circumstances and their coping possibilities. Nine main coping strategies were identified constituting transformative pathways in resource-creation. A theory of resource-creation is proposed as an addition to the current understanding of coping and the role of positive emotions. Coping and resources were found to be closely interrelated and portals of intervention are discussed.

Positive and Negative Experiences of Parenting a Pre-school Child with 22q11.2 Deletion Syndrome

“…Hastings and Taunt (2002) have also suggested the usefulness of conceptualising positive perceptions as a style of coping in parents who have a child with a developmental disability. This type of positive reappraisal has been demonstrated in other studies where a parent has a child with a severe disability (Graungaard et al 2011). Parents turned their experiences into resources such as engaging with hope.…”

Public health policy and social support for immigrant mothers raising disabled children in Canada

“…Mothers of children with chronic illnesses are found to be at risk of psychosocial problems (Barlow et al 1998) and mothers of children with disabilities or chronic illness experience high levels of stress (Burton et al 2008b;Miodrag and Hodapp 2010), depression (Singer 2006) and burnout (Pelchat, Lefebvre, and Levert 2007). Caregivers in this role must manage many different stressors (Hauskov-Graungaard et al 2011) and manage a high care burden (Miodrag and Hodapp 2010).…”

“…In research examining Canadian mothers of African and Caribbean descent raising children with sickle cell disease (Burnes et al 2008), mothers complained of mental health concerns as well as difficulties coping with stigma in combination with racism. Coping strategies such as positive reframing, the use of informational and social support (Hauskov-Graungaard et al 2011) are identified as essential to maternal well-being. Informational support is understood to reduce maternal stress where there are disabled children (Miller et al 1992).…”

‘We are dealing with it the best we can’: Exploring parents’ attributions regarding their child’s physical disability using the ‘Four Ws’ framework

“…It proved robust for facilitating the organisation of material, and the 'scaffolding' it provided (Morse & Richards, cited in J. M. Morse & Mitcham, 2002) did not need to be dismantled in the light of the emerging data; rather, the framework provided neutral boundaries within which the internal structures of the concepts could emerge, in the form of various subthemes. Additional themes also emerged, such as the place of emotions, and the richness of these warrants discussion in a further article, adding to recent findings by Graungaard et al (2011) on coping by parents of children with severe disabilities. The method we used avoided 're-inventing the wheel', by drawing upon the extensive attributions literature, while also permitting new information to emerge.…”