Care delivery for the child to grow up despite the pain: the family's experience

Rossato, Lisabelle Mariano; Ângelo, Margareth; Silva, Clóvis A.

doi:10.1590/s0104-11692007000400006

Cited by 6 publications

(2 citation statements)

References 8 publications

(13 reference statements)

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“…Rossato et al (2007) examined the impact on family members caring for a child with JA and identified motivational factors for these families, including the desire to see the child without pain and desiring the child to live a normal life.…”

Section: Psychosocial Functioning and Quality Of Lifementioning

confidence: 99%

Chronic Disorders in Children and Adolescents

Goldstein

Morewitz

2011

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Section: Psychosocial Functioning and Quality Of Lifementioning

confidence: 99%

Chronic Disorders in Children and Adolescents

Goldstein

Morewitz

2011

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“…18 Patients with JIA may also experience emotional difficulties, such as depression, anxiety, distorted self-image, and low self-esteem. 19 There is a moderate to high association between physical disability and psychological symptoms 20,21 ; however, evidence shows that, compared with physical symptoms, emotional difficulties have a greater impact on overall QOL for children with JIA. 22 There is evidence that parent/family characteristics are closely related to the physical or psychosocial functioning of children with chronic pain, 23 which may also be a case in JIA where chronic pain is common.…”

Section: Introductionmentioning

confidence: 99%

Experiences of living with juvenile idiopathic arthritis: a qualitative systematic review

Min

Hancock

Aromataris

et al. 2021

JBI Evidence Synthesis

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The objective of this review was to investigate the available qualitative evidence to enhance understanding of the experiences of children and young adults living with juvenile idiopathic arthritis, and their carers, in any setting.Introduction: Juvenile idiopathic arthritis is the most common chronic rheumatic disease in childhood. Despite the availability of effective treatments, persistent pain, growth retardation, physical disability, and psychological problems can occur. This may reduce the quality of life for patients with juvenile idiopathic arthritis by negatively affecting their family, educational, and social well-being. Patient-centered management and care for patients with juvenile idiopathic arthritis requires increasing attention to their self-reported quality of life and experiences, in addition to clinically measured disease activity. Furthermore, caring for children with juvenile idiopathic arthritis may have negative impacts on the lives of their carers and families. The experiences of carers have been poorly understood and studied. This review describes experiences and perspectives from patients and carers in order to inform the needs of families throughout their juvenile idiopathic arthritis journey.Inclusion criteria: Studies describing the experiences of patients aged <21 years who have been diagnosed with juvenile idiopathic arthritis according to the International League of Associations for Rheumatology criteria, as well as the experiences of their carers, have been considered.

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