The associations between resilience and socio-demographic factors in parents who care for their children with congenital heart disease

Delaney, Amy E.; Fu, Mei Rosemary; McTernan, Melissa; Marshall, Audrey C.; Lindberg, Jessica; Thiagarajan, Ravi R.; Zhou, Zhuzhu; Luo, Jiebei; Glazer, Sharon

doi:10.1016/j.ijnss.2022.06.003

Cited by 4 publications

(2 citation statements)

References 28 publications

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“…These aspects are typical of Domain B in the model. As seen in other research focusing on parents of children with chronic illness or disability, developing coping strategies (Fairfax et al, 2019) and building resilience are key to helping parents manage adversity and mitigate the stressors they encounter (Lee et al, 2004;Luo, 2021, Delaney, 2022. As the parents overcame and reflected on each new experience, it was evident that they became more confident in managing the next challenge.…”

Section: Discussionmentioning

confidence: 94%

“…Inherent within the structure of reframing, was the parents' belief that they had the resources they needed to make the desired change, and to redefine their negative situation into a positive one. Other studies of parents of children with chronic illness propose that parents would benefit from a compassionate approach from health professionals (Cousineau et al, 2019), family-focused practices (Lopez et al, 2019;Delaney et al, 2022), and interventions to support and cultivate parental resilience (Lopez et al, 2019;Qiu et al, 2021;Delaney et al, 2022;Luo et al, 2022).…”

Section: Discussionmentioning

confidence: 99%

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Feeling stretched: Parents’ narratives about challenges to resilience when their child has a tracheostomy

Flynn

Whittaker

Donne

et al. 2023

J Child Health Care

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This study aimed to examine how parents develop personal resilience when facing the challenges of caring for a child with tracheostomy. This study employed a longitudinal qualitative design. Unstructured narrative interviews with 12 parents (from nine families) whose child had a new tracheostomy were undertaken at three time points over 12 months. Data were analysed using a socio-narratology method. Findings reveal the journey parents experienced, how their feelings changed and the processes involved in developing resilience over the first 12 months of their child having a tracheostomy. Stories told by parents early in their journey revealed emotional upheaval, negative emotions, stress and shock. Due to medical need, parents had little or no choice for their child to have a tracheostomy. Once their child’s life was out of danger, parents started to reframe their experiences and beliefs. Resilience played a major part in how parents perceived and faced their situation, allowing them to deal with what came their way and to move forward with their lives. Different aspects of resilience such as self-awareness, grit, gratitude, internal locus of control and reframing came to the fore at different time points. Parents talked feeling stretched by the challenges they faced and how they reframed their perspectives about their child’s tracheostomy. Parents’ resilience and reframing is discussed in relation to the ABC-X model. This study identifies a theoretical model that explains this process of change, this results in transferable knowledge, useful for understanding and explaining the experience of other parents and families.

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