The Association of Illness Uncertainty to Parent and Youth Adjustment in Juvenile Rheumatic Diseases: Effect of Youth Age

Fedele, David A.; Ramsey, Rachelle R.; Ryan, Jamie; Bonner, Margaret S.; Mullins, Larry L.; Jarvis, James N.; Chaney, John M.

doi:10.1097/dbp.0b013e318210ff2c

Cited by 24 publications

(11 citation statements)

References 29 publications

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“…This was 0.91 for the total scale , while component reliability measures ranged from 0.87 for ‘ambiguity’ to 0.72 ‘unpredictability’. Reliability was further confirmed through subsequent testing among parents of critically ill children (α = 0.92), spina bifida (α = 0.81), leukaemia (α = 0.90), cystic fibrosis (α = 0.89) , diabetes mellitus type 1 (α = 0.88) and juvenile rheumatic diseases (α = 0.88) .…”

Section: The Studymentioning

confidence: 97%

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The quality of information received by parents of children with chronic ill health attending hospitals as indicated by measures of illness uncertainty

Al‐Yateem

Docherty

Altawil

et al. 2017

Scandinavian Caring Sciences

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Section: The Studymentioning

confidence: 97%

“…cancer, Cardiac conditions, HIV) . It has been shown to be a useful outcome measure in the support of parents of children suffering chronic health problems such as diabetes mellitus , juvenile arthritis , cancer and similar complex conditions . It has been found useful in both acute and critical illnesses .…”

Section: Introductionmentioning

confidence: 99%

The quality of information received by parents of children with chronic ill health attending hospitals as indicated by measures of illness uncertainty

Al‐Yateem

Docherty

Altawil

et al. 2017

Scandinavian Caring Sciences

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“…Determination of the child's level of vision is important not only because uncertainty compounds parental distress,9 but also to form the basis for advice on vision and developmental promotion. A detailed history that invites open descriptions is particularly helpful in children with a low level of vision or in children with limited movement and vocalisation 10.…”

Section: Diagnosis and Assessmentmentioning

confidence: 99%

Management of children and young people with vision impairment: diagnosis, developmental challenges and outcomes

2016

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Vision impairment (VI) has a significant impact on an individual's ability to engage with everyday tasks. Severe early-onset VI presents different challenges to adult onset visual loss since reduced visual input presents a major obstacle to the acquisition and development of fundamental developmental skills in early and later childhood. Early referral of the child with reduced vision is vital to ensure accurate diagnosis and prompt treatment of any modifiable aspects of the condition. Guidance to ensure optimisation of developmental opportunity through adaptation of play and care is vital from the earliest stages. Cognitive and social challenges occur throughout education and need to be understood and addressed through skilled support. Multiagency input, particularly from health and education, is vital to minimise the risk of adverse outcomes and promote successful transition to independent adulthood. VI may also arise in a variety of neurological disorders, and diagnosis and assessment to ensure appropriate adaptations are made is also crucial for this group of children. This review provides the paediatrician with information on diagnosis, assessment, long-term support needs and outcomes.

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“…A majority of parents in the current study had children with JIA who were less than 12 years old. Fedele et al (23) found that the association between parental uncertainty and parental distress was greater in parents of older children and that parental uncertainty was related to increased child depressive symptoms in older, but not younger, children. It may be that other issues around uncertainty would have been identified if we had recruited more parents of older children.…”

Section: Discussionmentioning

confidence: 99%

“…Two studies of uncertainty have been conducted with parents of children with juvenile rheumatic diseases (a majority of whom had JIA) and found that parent perceptions of illness uncertainty were related to parent and child distress (22,23). These studies reported illness uncertainty using a single dimension score, whereas research by Cleanthous et al in adult rheumatological disease (24) found that illness uncertainty is multidimensional, incorporating five domains, namely, uncertainty relating to symptoms and prognosis, medical management, self‐management, impact, and social functioning.…”

Section: Introductionmentioning

confidence: 99%

Illness Uncertainty in Parents of Children with Juvenile Idiopathic Arthritis

Pearce

Newman

Mulligan

2021

ACR Open Rheumatology

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Objective To gain a better understanding of uncertainty regarding the illness experienced by parents of children with juvenile idiopathic arthritis (JIA). Methods Parents/guardians of a child or young person (aged less than 18 years) diagnosed JIA were recruited in the United Kingdom via the National Rheumatoid Arthritis Society JIA group. Semistructured telephone interviews were conducted with the parents. Results Twenty parents took part, including 19 mothers and one father. Their children with JIA were mostly female (n = 15; 75%) with polyarticular arthritis (n = 12; 60%), averaged 8 years of age, and had been diagnosed for a mean of 3.7 (SD 2.3) years. Parents expressed uncertainty in the following five key domains: diagnosis, cause, symptoms, and prognosis; medical management; impact; parenting uncertainty; and awareness of JIA. All participants expressed uncertainty in at least four of the five domains. Although parents’ uncertainty in the early stages of the disease related to lack of information and understanding of JIA, much uncertainty could not be resolved by receipt of information. These included concerns about their child’s future and a lack of support with managing the emotional aspects of living with JIA. Conclusion We found that parents’ experiences of uncertainty went beyond dealing with the purely medical aspects of JIA. Provision of information about JIA, although essential, is not sufficient to help parents manage the considerable uncertainty they experience about many aspects of their child’s JIA. Identifying ways to incorporate support for coping with uncertainty into routine care will be an important way of supporting parents to care for their child with JIA.

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The Association of Illness Uncertainty to Parent and Youth Adjustment in Juvenile Rheumatic Diseases: Effect of Youth Age

Cited by 24 publications

References 29 publications

The quality of information received by parents of children with chronic ill health attending hospitals as indicated by measures of illness uncertainty

The quality of information received by parents of children with chronic ill health attending hospitals as indicated by measures of illness uncertainty

Management of children and young people with vision impairment: diagnosis, developmental challenges and outcomes

Illness Uncertainty in Parents of Children with Juvenile Idiopathic Arthritis

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