Parent Perceptions of Illness Uncertainty and Child Depressive Symptoms in Juvenile Rheumatic Diseases: Examining Caregiver Demand and Parent Distress as Mediators

Chaney, John M.; Gamwell, Kaitlyn L.; Baraldi, Amanda N.; Ramsey, Rachelle R.; Cushing, Christopher C.; Mullins, Amy; Gillaspy, Stephen R.; Jarvis, James N.; Mullins, Larry L.

doi:10.1093/jpepsy/jsw004

Cited by 41 publications

(31 citation statements)

References 52 publications

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“…The concept of 'illness uncertainty' has been explored both in acute and chronic illnesses [14,15] and Mishel has defined it as the inability to determine the meaning of illness related events [16]. The influence of illness uncertainty has been examined in lifethreatening conditions such as cancer [17][18][19][20], cardiopulmonary conditions [21,22] and HIV [23,24] and is found to be an additional psychosocial stressor on patients [25] and families [26]. Individuals living with SCD and their families may also experience uncertainty in everyday life due to the unpredictability of onset of a painful crisis and unforeseen complications, such as infections or the fear of early death.…”

Section: Introductionmentioning

confidence: 99%

Stigma and illness uncertainty: adding to the burden of sickle cell disease

et al. 2017

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Section: Introductionmentioning

confidence: 99%

Stigma and illness uncertainty: adding to the burden of sickle cell disease

et al. 2017

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“…The conceptual framework of “uncertainty in illness” was found to be helpful for interpreting the data although it was not used to develop the study or its methods (Mishel, ; Mishel, ). That is, uncertainty is described as the inability to determine the meaning of illness‐related events and may be related to distress or confusion (Chaney, Gamwell, Baraldi, et al, ; Eisenberg et al, ; Sajjadi, Rassouli, Abbaszadeh, Brant, & Majd, ). These mothers apparently preferred to use emotional coping, by avoiding detailed explanations to their young children and avoiding more research for more medical information about the condition.…”

Section: Discussionmentioning

confidence: 99%

Maternal coping with the prospect of liver transplant among their school‐age children

Hiratsuka

Nakamura

Sato

2017

Int J of Nursing Practice

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The purpose of the current study was to describe the following: maternal coping with the prospect of becoming the living-donor liver transplant for their child; the daily lives of school-age children surviving biliary atresia with their native liver; and to explore the relationship between these individuals. Semistructured interviews were conducted with 6 school-age children surviving biliary atresia with their native liver and their mothers. The interviews were conducted from June to August 2014, and a qualitative content analysis was used. Results showed that mothers realized a possible need for transplantation in the future, which contributes to emotional and practical uncertainties. The mothers coexisted with this uncertainty and preferred to use a buffering strategy. In contrast, the children did not consider their illness and future and did not adhere to a therapeutic regimen. It is suggested that living with uncertainty about the health and survival of their children is advantageous for mothers. However, problems related to the psychosocial aspect and child's adherence may occur in the future. In addition, problem-solving coping strategies for mothers and the independence of chronically ill children with liver disease should be promoted.

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“…Multiple areas have been described as affected in caregivers of patients with JIA, some of those appeared during the descriptive analysis of the population. In other studies, changes were reported in relationships and role distribution in families, emotional distress experiences, appraisal of illness uncertainty, elevated out-of-pocket costs and limited time for other activities [10,13,14,28,[32][33][34]. Results also show that caregivers often avoid to reveal their emotions to other family members [13,14,35].…”

Section: Discusionmentioning

confidence: 75%

Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers

et al. 2020

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Background: The primary caregiver is an important person in the life of patients with JIA. Their reactions depend on social, emotional and economic factors that affect the therapeutic alliance. Some generic instruments have been used to evaluate burden, anxiety, or quality of life of caregivers. This study aims to develop a specific instrument to measure the psychosocial and economic impacts on primary caregivers of patients with JIA. Methodology: This is a mixed methods research, that includes qualitative and quantitative data, and was carried out in two phases. First phase: a pragmatic qualitative study (questionnaire construction) was conducted in two parts, a non-systematic literature review followed by interviews with primary caregivers. Second phase: a crosssectional study (questionnaire validation) to complete validation and estimate Cronbach's alphas based on tetrachoric correlation coefficients, correlation matrix and Cohen's kappa coefficient test. Results: There were 38 articles found related to the experience of caregivers. 15 primary caregivers were interviewed (female 93%, median age 45 years). Thematic analysis identified 9 important topics from the perspective of participants (economic impact, coping, family roles, impact of diagnosis, mental health, couple/mate relationships, impact at work, religion, and knowledge of the disease). These topics were combined to create the interview questionnaire (56 items). Later, it was modified to 62 items that were divided into five dimensions: impact of the disease (psychosocial, economic, family, and relationships), knowledge of the disease, alternative medicine, future, and religion. The interview questionnaire was applied to 32 primary caregivers (female 93%, median age 37 years), results identify depression on 29 (90%), 18 (56%) feel sadness at diagnosis, 20 (63%) mentioned that JIA has influenced in their financial situation, 23 (72%) feel anxiety about the future, and 11 (37%) considered that their family relationships have changed. Statistical analysis identified inconsistencies during convergent and divergent validity of the construct. Consequently, 11 items were eliminated, 3 relocated, 6 modified, and 39 compacted obtaining the "Impact of Pediatric Rheumatic Diseases on Caregivers Multi-assessment Questionnaire" (CAREGIVERS questionnaire). This final version resulted on an eight-dimension (28 items) instrument. Conclusions: The CAREGIVERS questionnaire captures perspectives of both the participants and clinicians. It will be helpful to measure the impact of the disease and thus, to improve the quality of care of children with JIA and their families.

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Parent Perceptions of Illness Uncertainty and Child Depressive Symptoms in Juvenile Rheumatic Diseases: Examining Caregiver Demand and Parent Distress as Mediators

Abstract: Results highlight the role of illness appraisals in adjustment to juvenile rheumatic diseases, and provide preliminary evidence that parent appraisals of illness uncertainty impact parent distress and child depressive symptoms indirectly through increased perceptions of caregiver demand.

Cited by 41 publications

References 52 publications

Stigma and illness uncertainty: adding to the burden of sickle cell disease

Stigma and illness uncertainty: adding to the burden of sickle cell disease

Maternal coping with the prospect of liver transplant among their school‐age children

Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers

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