Parent Adaptation and Family Functioning in Relation to Narratives of Children With Chronic Illness

Popp, Jill; Robinson, JoAnn; Britner, Preston A.; Blank, Thomas

doi:10.1016/j.pedn.2013.07.004

Cited by 51 publications

(34 citation statements)

References 29 publications

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“…Although the moderating effect of family functioning on the link between headache intensity and distress has not been explored previously, a few studies in the context of chronic physical illness indicated that patients with more functional families showed lower levels of psychological problems compared to their counterparts with less functional families (Lewandowski, Palermo, Stinson, Handley, & Chambers, 2010;Logan & Scharff, 2005). These findings imply that functional families provide their members, specifically patients, with an opportunity to communicate their illness-related problems in a healthy, direct and clear way (Popp, Robinson, Britner, & Blank, 2014), and could therefore provide Table 1. the correlations between all the variables.…”

Section: Discussionmentioning

confidence: 97%

The buffering effect of family functioning on the psychological consequences of headache

Mohammadi

zandieh

Dehghani

et al. 2016

Psychology, Health & Medicine

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Section: Discussionmentioning

confidence: 97%

The buffering effect of family functioning on the psychological consequences of headache

Mohammadi

zandieh

Dehghani

et al. 2016

Psychology, Health & Medicine

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“…Most of the research on parental narratives has focused on diagnosed childhood chronic illness or cancer and thus these experiences are different from those of parents of children who apply to the UDN [22, 28]. For childhood cancer for example, although there is uncertainty about the future, there is a definitive diagnosis, a network of other parents who have children with the same diagnosis, and a plethora of support, resources, and possible next steps that are outlined by their healthcare providers.…”

Section: Discussionmentioning

confidence: 99%

A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network

Spillmann

McConkie‐Rosell

Peña

et al. 2017

Orphanet J Rare Dis

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BackgroundPatients’ stories of their illnesses help bridge the divide between patients and providers, facilitating more humane medical care. Illness narratives have been classified into three types: restitution (expectation of recovery), chaos (suffering and loss), and quest (unexpected positive effect from illness). Undiagnosed patients have unique illness experiences and obtaining their narratives would provide insights into the medical and emotional impact of living with an undiagnosed illness. Adults and children with undiagnosed diseases apply to be evaluated by the Undiagnosed Diseases Network (UDN). Written illness narratives from 40 UDN applicants, including 20 adult probands who applied for themselves and 20 parents who applied for their children, were analyzed for: 1) narrative content and 2) narrative type.Results Narrative content: could be grouped into three themes: 1) Expectations of the UDN: the majority felt they had no further healthcare options and hoped the UDN would provide them with a diagnosis, with the adults expecting to return to their previously healthy life and the parents wanting information to manage their child’s healthcare. 2) Personal medical information: the narratives reported worsening of symptoms and some offered opinions regarding the cause of their illness. The proband narratives had few objective findings, while parental narratives had detailed objective information. 3) Experiences related to living with their undiagnosed illness: frustration at being undiagnosed was expressed. The adults felt they had to provide validation of their symptoms to providers, given the lack of objective findings. The parents worried that something relevant to their child’s management was being overlooked. Narrative type: All the narratives were of the chaos type, but for different reasons, with the probands describing loss and suffering and the parents expressing fear for their child’s future. The parental narratives also had elements of restitution and quest, with acceptance of “a new normal”, and an emphasis on the positive aspects of their child’s illness which was absent from the probands.ConclusionsThese narratives illustrate the chaos that coexists with being undiagnosed. The differences between the proband and parental narratives suggest that these two groups have different needs that need to be considered during their evaluation and management.

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“…In addition, parents were rated as being Resolved or Unresolved in terms of their orientation towards their child’s diagnosis of chronic pain. This code was adapted from the Reaction to Diagnosis Interview coding system 32, 33 . A resolved orientation was characterized by expressing a change in feelings since the time of their child’s diagnosis; for example, by moving on from the trauma or disorganization that often occurs.…”

Section: Methodsmentioning

confidence: 99%

Characterizing the Pain Narratives of Parents of Youth With Chronic Pain

Noel

Beals-Erickson²,

Law

et al. 2016

The Clinical Journal of Pain

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Objectives Questionnaire-based research has shown that parents exert a powerful influence on and are profoundly influenced by living with a child with chronic pain. Examination of parents' pain narratives through an observational lens offers an alternative approach to understanding the complexity of pediatric chronic pain; however, the narratives of parents of youth with chronic pain have been largely overlooked. The present study aimed to characterize the vulnerability- and resilience-based aspects of the pain narratives of parents of youth with chronic pain. Methods Pain narratives of 46 parents were recorded during the baseline session as part of two clinical trials evaluating a behavioral intervention for parents of youth with chronic pain. The narratives were coded for aspects of pain-related vulnerability and resilience. Results Using exploratory cluster analysis, two styles of parents’ pain narratives were identified. Distress narratives were characterized by more negative affect and an exclusively unresolved orientation towards the child’s diagnosis of chronic pain whereas resilience narratives were characterized by positive affect and a predominantly resolved orientation towards the child’s diagnosis. Preliminary support for the validity of these clusters was provided through our finding of differences between clusters in parental pain catastrophizing about child pain (helplessness). Discussion Findings highlight the multidimensional nature of parents’ experience of their child’s pain problem. Clinical implications in terms of assessment and treatment are discussed.

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Parent Adaptation and Family Functioning in Relation to Narratives of Children With Chronic Illness

Cited by 51 publications

References 29 publications

The buffering effect of family functioning on the psychological consequences of headache

The buffering effect of family functioning on the psychological consequences of headache

A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network

Characterizing the Pain Narratives of Parents of Youth With Chronic Pain

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