Consumer Perspectives on Pediatric Rheumatology Care and Service Delivery

Tong, Allison; Jones, Julie; Speerin, Robyn; Filocamo, Karen; Chaitow, Jeffery; Singh‐Grewal, Davinder

doi:10.1097/rhu.0b013e31829d4e82

Cited by 29 publications

(61 citation statements)

References 31 publications

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“…The majority of patients told their classroom teachers and gym teachers about their disease and felt that their teachers understood their disease and that the school was supportive. In contrast, other studies have reported problems communicating with teachers , negative experiences with teachers , and a lack of overall understanding about JIA . The results of our study were promising, as a previous study by Asbjørnslett and Hemmingsson identified that “students’ experiences of participation seemed to be linked to their opportunities to establish some cooperation with the teacher, to have a say, and thus influence their own schooling in order to optimize possibilities for adaptation to their learning environments” (10; p158).…”

Section: Discussionsupporting

confidence: 55%

Patient‐Reported Barriers at School for Children with Juvenile Idiopathic Arthritis

Chomistek

Johnson

Stevenson

et al. 2019

ACR Open Rheumatology

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ObjectiveThe objective of this study was to identify patient‐reported school barriers and their associated impact in juvenile idiopathic arthritis (JIA).MethodsA cross‐sectional observational study of children aged 8 to 17, diagnosed with JIA, and followed in the rheumatology clinic/Alberta Children's Hospital was performed. Demographics, diagnosis, and disease course were obtained from health records. A questionnaire was administered to the child to assess the barriers experienced by JIA patients at school. The questionnaire collected information about school attendance/performance, impact of JIA symptoms (eg, pain and fatigue), physical challenges and accommodations, communication, participation and peers, and school support. Descriptive statistics were used to analyze the data.ResultsA total of 98 children with JIA were recruited into the study. The median age of participants was 13 years (interquartile range 11‐15). The JIA subtypes in this cohort reflected the normal JIA distribution. Physical challenges at school (eg, gym, writing, and sitting for long periods of time) were reported by 42.1% of patients. Accommodations (eg, modified gym, accommodation letter, and computer access) were used by 23% of patients. The inability to participate in activities in class or outside with their peers occurred for 32.2% of patients and in gym for 40.7% of patients. Social concerns included embarrassment from talking about their illness, worry regarding being treated differently, and being told they were fabricating their illness.ConclusionChildren with JIA experienced barriers at school, especially physical challenges, with a need for accommodations in a proportion of children. Decreased participation and increased social anxiety were additional key barriers.

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Section: Discussionsupporting

confidence: 55%

Patient‐Reported Barriers at School for Children with Juvenile Idiopathic Arthritis

Chomistek

Johnson

Stevenson

et al. 2019

ACR Open Rheumatology

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“…Geographical distance created both practical and personal barriers to accessing service needs, including financial, transport, lack of time, fatigue and feelings of isolation. These issues have been reported elsewhere (Gan, Gargaro, Brandys, Gerber, & Boschen, 2010;Tong et al, 2013), and all affected the mothers' physical and emotional well-being (Hoogsteen & Woodgate, 2013).…”

Section: Discussionmentioning

confidence: 70%

The rural mother's experience of caring for a child with a chronic health condition: An integrative review

Bristow

Jackson

Shields

et al. 2018

Journal of Clinical Nursing

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There is a need for health professionals to understand the challenges and barriers rural mothers face in accessing services. Nurses can assist rural mothers to navigate and access the appropriate services in order to reduce health inequity, increase accessibility to services and reduce rural disadvantage for their child. Nurses and health professionals are in an ideal position to develop future models of care that optimise health outcomes and enable equity and access to services for rural children with chronic conditions similar to those experienced by their urban counterparts.

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“…In one study of CIPS, participants referred to these high levels of pain as 'pain attacks' or ' are-ups', which could occur several times a day and last for hours (34). Similarly, the term ' are-up' was used in seven JIA studies, though this time referring to periods of acute disease (31,(36)(37)(38)(39)(40)(41). Little differences were observed between the experiences of disease and pain ares, with both reported to negatively impact adolescents' lives, including their level of con dence, identity and independence in daily living and social activities (37).…”

Section: Fluctuating Painmentioning

confidence: 99%

“…Adolescents expressed concerns about how long the pain would last, when it would recur, how it would affect their plans and the long-term prospects of requiring medication (33,38,42,50,51,59). Concerns about the future appeared to be more significant for older compared with younger adolescents (38,(50)(51)(52)59) who may be more aware of the implications on their lives due to greater abstract thought in middle to late adolescence (45). Concerns were also expressed more in those who had experienced pain for a shorter period, suggesting that those with longer pain duration may normalise their experiences and learn to adapt their lives to their pain (51).…”

Section: Future Uncertaintymentioning

confidence: 99%

“…Adolescents faced issues with legitimacy with peers (38,51,60), teachers (38,50), siblings (53) and professionals (34,42,51) when there were no visible signs of pain or disease. Particularly among adolescents with CIPS, when professionals were unable to nd an organic cause to their condition and referred them to a psychologist, they felt that the pain was perceived to be imagined (34).…”

Section: Disbelieved and Stigmatisedmentioning

confidence: 99%

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Adolescents’ experiences of fluctuating pain in musculoskeletal disorders: A qualitative systematic review and thematic synthesis

Khanom¹,

orcid²,

McDonagh³

et al. 2020

Preprint

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Background Adolescents with chronic musculoskeletal pain experience daily fluctuations in pain. Although not all fluctuations are bothersome, pain flares are a distinct type of symptom fluctuation with greater impact. Since literature on the experience of pain flares is non-existent, the aim of this review was to (i) synthesise the qualitative literature on adolescents’ experiences of fluctuating pain in musculoskeletal disorders in order to (ii) identify knowledge gaps to inform future research on pain flares. Methods Electronic databases (CINAHL, MEDLINE, EMBASE, PsycINFO), grey literature and reference lists were searched from inception to June 2018 for qualitative studies reporting adolescents’ experiences of pain. Comprehensiveness of reporting was assessed using the Consolidated Criteria for Reporting Qualitative Health Research. Studies were analysed using thematic synthesis.Results Of the 3787 records identified, 32 studies (n= 536) were included. Principal findings were synthesised under three key themes: 1) symptom experience, 2) disruption and loss, and 3) regaining control. The first theme (symptom experience) describes adolescent’s perception and interpretation of pain fluctuations. The second theme (disruption and loss) describes the physical, social and emotional constraints faced as a result of changes in pain. The third theme (regaining control) describes coping strategies used to resist and accommodate unpredictable phases of pain. Each theme was experienced differently depending on adolescents’ characteristics such as their developmental status, pain condition, and the duration of the pain experience.Conclusions Adolescents with chronic musculoskeletal pain live with a daily background level of symptoms which frequently fluctuate and are associated with functional and emotional difficulties. It was not clear whether these symptoms and challenges were experienced as part of ‘typical’ fluctuations in pain, or whether they reflect symptom exacerbations classified as ‘flares’. Further research is needed to explore the frequency and characteristics of pain flares, and how they differ from their typical fluctuations in pain. The review also highlights areas relating to the pain experience, symptom management and health service provision that require further exploration to support more personalised, tailored care for adolescents with chronic musculoskeletal pain.

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Consumer Perspectives on Pediatric Rheumatology Care and Service Delivery

Cited by 29 publications

References 31 publications

Patient‐Reported Barriers at School for Children with Juvenile Idiopathic Arthritis

Patient‐Reported Barriers at School for Children with Juvenile Idiopathic Arthritis

The rural mother's experience of caring for a child with a chronic health condition: An integrative review

Adolescents’ experiences of fluctuating pain in musculoskeletal disorders: A qualitative systematic review and thematic synthesis

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