Providing care to a child with cancer: a longitudinal study on the course, predictors, and impact of caregiving stress during the first year after diagnosis

Sulkers, Esther; Tissing, Wim J. E.; Brinksma, Aeltsje; Roodbol, Petrie F.; Kamps, Willem A.; Stewart, Roy E.; Sanderman, Robbert; Fleer, Joke

doi:10.1002/pon.3652

Cited by 78 publications

(65 citation statements)

References 48 publications

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“…Inappropriate behavior of the child [14] and caregiving demands have been identified as predictors of stress [15]. Family circumstances, such as single marital status or the ill child being an only child were also found to predict caregiver burden [16]. The majority of studies identified in a recent meta-analysis on parenting stress focused only on predictors related to a single condition, and most studies focused on asthma, diabetes, cancer, or cystic fibrosis [17].…”

Section: Introductionmentioning

confidence: 99%

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

et al. 2017

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Objective: The complex medical regimens of children and adolescents with chronic conditions can have a significant impact on families and households. Caregivers may experience burden, which can lead to negative health consequences and poor quality of life. The objective of this study was to determine child-related predictors and risk factors for caregiver burden among parents of children with chronic conditions. Methods: We distributed an institutional review board (IRB)-approved, online cross-sectional survey to parents of children who attended the Victory Junction therapeutic camp. Parents provided information on child demographics, disease characteristics, and healthcare utilization. Parents also answered the adapted Zarit Burden Interview, which measured caregiver burden. Children completed scales about self-management and self-efficacy. Linear regression analyses determined how children’s disease characteristics, health utilization, and self-management skills were associated with caregiver burden. Results: We enrolled 150 mother-child dyads. The mean age of child participants was 12.23 years (±2.5), with an age range of 6 to 16 years. It was determined that children’s number of medicines and injections (β = 0.161, p = 0.047), a diagnosis of attention-deficit/hyperactivity disorder (ADHD) in addition to the primary medical condition (β = 0.216, p = 0.008), frequent visits with a primary care provider (PCP) (β = 0.209, p = 0.026) and emergency room (ER) visits (β = 0.197, p = 0.038), and lower child self-efficacy (β = −0.241, p = 0.041) were predictors of increased caregiver burden. Conclusions: We identified risk factors for caregiver burden among mothers. Future studies should explore additional child-related characteristics as they relate to caregiver burden, and should determine if interventions for mothers of children with chronic conditions can lead to positive outcomes.

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Section: Introductionmentioning

confidence: 99%

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

et al. 2017

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“…El estudio longitudinal de Sulkers et al (2015) realizado en Holanda, también reportó resultados similares, encontrando que las mamás solteras y las mamás con un solo hijo que fungían como cuidadoras primarias, destacaron con los puntajes más altos de estrés. En esta investigación, se puede observar que la submuestra de cuidadoras que tienen un solo hijo presentan altos niveles de estrés, mientras que las que tienen más de un hijo reportan estar equilibradas.…”

Section: Conclusiónunclassified

“…Uno de estos estudios es el realizado en Holanda por Sulkers et al (2015), el cual reportó que las mamás solteras y las mamás con un solo hijo que fungían como cuidadoras primarias de ñiños/niñas con diagnóstico de cáncer, destacaron con los puntajes más altos de esta variable.…”

Section: Introductionunclassified

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Estrés, Sobrecarga Y Ansiedad En Cuidadoras Primarias De Niños Que Padecen Leucemia En Hidalgo

Ríos

Martínez

Arreola

et al. 2017

ESJ

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Leukemia is the type of cancer that occurs more in children and teenagers. The chronic-degenerative nature of the disease makes that the minors need someone responsible for their care known as informal primary caregiver. Generally, the primary caregiver role, who attends all the patient needs, it's acquired by the father or mother of the minor. The demands of that labor can bring negative physiological and psychosocial consequences. Objective: to determine the relationship and the difference by sex and disease phase of the minor in the levels of stress, burden and anxiety of primary caregivers of boys and girls with leukemia in Hidalgo. Method: through a non-probability sampling of volunteers subjects were selected N = 50 female primary caregivers. To measure the variables they were used the following instruments: Perceived Stress Scale, Zarit Caregiver Burden Scale and Beck Anxiety Inventory. Results: showed positive and statistically significant correlations between anxiety-burden and stress-anxiety. It also found that the caregivers of boys have higher levels of anxiety than caregivers of girls and caregivers of patients in active phase of the disease have higher burden compared with caregivers of patients in remission phase. Conclusion: there are some high levels of stress, burden and anxiety in caregivers. There exists correlation between anxiety-stress and burdenanxiety. The caregivers of boys have more anxiety. The caregivers of children in active phase of the disease present more burden. Keywords:Stress, burden, anxiety, primary caregiver European Scientific Journal August 2017 edition Vol.13, No.24 ISSN: 1857 -7881 (Print) e -ISSN 1857-7431 80 ResumenLa leucemia es el tipo de cáncer que más se presenta en niños y adolescentes. La naturaleza crónica-degenerativa de la enfermedad hace que los menores necesiten de alguien responsable de su cuidado conocido como cuidador primario informal. Generalmente, el rol de cuidador primario, quien atiende todas las necesidades del paciente, es adquirido por el padre o madre del menor. Las demandas de dicha labor pueden traer consecuencias negativas a nivel fisiológico y psicosocial. Objetivo: determinar la relación y la diferencia por sexo y fase de la enfermedad del menor en los niveles de estrés, sobrecarga y ansiedad en cuidadoras primarias de niños y niñas con leucemia en Hidalgo. Método: a través de una muestra no probabilística de sujetos voluntarios se seleccionaron N = 50 cuidadoras primarias. Para medir las variables se utilizaron los siguientes instrumentos: Escala de Estrés Percibido, Escala de Carga del Cuidador de Zarit e Inventario de Ansiedad de Beck. Resultados: se encontraron correlaciones positivas y estadísticamente significativas entre ansiedad-sobrecarga y estrés-ansiedad. También se encontró que las cuidadoras de niños presentan mayores niveles de ansiedad que las cuidadoras de niñas y las cuidadoras de pacientes en fase activa de la enfermedad presentan mayor sobrecarga en comparación con las cuidadoras de pacientes en fase de remisión....

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“…Some patients similarly express concern over accessing frightening or confusing information whereas others report feeling more involved and knowledgeable about their health through portal usage . Caregivers of children with cancer have increased anxiety in response to their child's diagnosis and treatment . Allowing swift access to results may reduce this level of anxiety; however, access to material not intended for a lay audience could also exacerbate anxiety and cause harm.…”

Section: Introductionmentioning

confidence: 99%

Are on‐line patient portals meeting test result preferences of caregivers of children with cancer? A qualitative exploration

Schultz

Alderfer

2018

Pediatric Blood & Cancer

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Providing care to a child with cancer: a longitudinal study on the course, predictors, and impact of caregiving stress during the first year after diagnosis

Cited by 78 publications

References 48 publications

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

Estrés, Sobrecarga Y Ansiedad En Cuidadoras Primarias De Niños Que Padecen Leucemia En Hidalgo

Are on‐line patient portals meeting test result preferences of caregivers of children with cancer? A qualitative exploration

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