Journeys of adjustment: the experiences of adolescents living with juvenile idiopathic arthritis

Abstract

Background: Juvenile Idiopathic Arthritis (JIA) is one of the most common diseases of childhood

Patient-reported Outcomes across Categories of Juvenile Idiopathic Arthritis

“…The presence of fatigue and amplified musculoskeletal pain have been reported to influence PROs (30, 31), and this was not systematically recorded in our cohort. Another study suggests that patients place emphasis on being like their peers without a chronic condition and emphasize the psychosocial aspect of living with JIA (32), and these domains were not fully captured by our PROs. Similarly, we do not have measures of baseline physical activity, school performance, comorbid conditions, or psychological diagnosis which may also influence PROs.…”

“It's not who I am”: Children's experiences of growing up with a long‐term condition in England, Australia, and New Zealand

“…Most evidence relating to the experience of growing up with a long‐term condition and the impact this may have on a child's expected developmental trajectory (Venning, Eliott, Wilson, & Kettler, ) is quantitative and addresses the perspectives of older children and adolescents (e.g., Smith, Taylor, Newbould, & Keady, ) with diabetes, asthma, cystic fibrosis, and rheumatic conditions (see, e.g., Cartwright, Fraser, Edmunds, Wilkinson, & Jacobs, ; Jessup & Parkinson, ; Jonsson, Egmar, Hallner, & Kull, ; Marshall, Carter, Rose, & Brotherton, ). The impact and influence of a long‐term condition on adolescents tend to be reported in terms of the young people's resilience and how the young people adjust to and aim for control over the disruption associated with the condition (Cartwright et al., ; Ferguson & Walker, ; Tong, Jones, Craig, & Singh‐Grewal, ). However, positive affirmatory (Nicholas, Picone, & Selkirk, ), resourceful (Cartwright et al., ), and mastery (Heaton, Räisänen, & Salinas, ) responses to chronic illness have to be seen in the context of the challenges that the young people face (Venning et al., ).…”

A fine balance and a shared learning journey: Exploring healthcare engagement through the experiences of youth with Neuromuscular Disorders

“…The process of acceptance that some things can be changed, and others cannot, reflects a strategy of resilience identified in youths' with developmental disability (Cartwright, Fraser, Edmunds, Wilkinson, & Jacobs, 2015;Silverman, Verrall, Alschuler, Smith, & Ehde, 2016). Self-awareness, self-reflection, goal orientation and acceptance were described by participants in this study as important elements to boost their sense of control.…”

“…The value of supportive relationships to adolescent health outcomes (Cartwright et al, 2015;Molcho, Gabhainn, & Kelleher, 2007) and coping with NMD (Lamb & Peden, 2008) has been previously reported. An important finding was the value of trusted, personal relationships to youth's learning and uptake of health behaviors.…”