Exploring views on satisfaction with life in young children with chronic illness: An innovative approach to the collection of self-report data from children under 11

Christie, Deborah; Romano, Gabriella; Barnes, Jacqueline; Madge, Nicola; Nicholas, David; Koot, Hans M.; Armstrong, Daniel; Shevlin, Mark; Kantaris, Xenya; Khatun, Hasina; Sutcliffe, Alastair

doi:10.1177/1359104510392309

Cited by 9 publications

(6 citation statements)

References 22 publications

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“…36, Additionally, the few studies specifically used to investigate life satisfaction outcomes for younger children are not focused on healthrelated factors 33 or differences by chronic illness status 13 ; in other studies, life satisfaction is conflated with related constructs (eg, positive affect). 37 Although the authors of 1 novel study elicited qualitative reports of life satisfaction from children as young as 5 years through a board-game format, 38 such methods are not feasible for population-level assessment. Thus, with the current study, we provide the first crosscohort quantitative analysis assessing This study has several limitations.…”

Section: Discussionmentioning

confidence: 99%

General Health and Life Satisfaction in Children With Chronic Illness

et al. 2019

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OBJECTIVES: To investigate children's general health and life satisfaction in the context of chronic illness. METHODS: Caregivers (n = 1113) from 3 concurrent cohort studies completed the Patient-Reported Outcomes Measurement Information System Parent-Proxy Global Health measure, which is used to assess a child's overall physical, mental, and social health, as well as the Patient-Reported Outcomes Measurement Information System Parent-Proxy Life Satisfaction measure between March 2017 and December 2017 for 1253 children aged 5 to 9 years. We harmonized demographic factors and family environmental stressors (single parent, maternal mental health, and income) to common metrics across the cohorts. To examine associations between chronic illness and children's general health and life satisfaction, we fit linear regression models with cohort fixed effects and accounted for the multilevel data structure of multiple children nested within the same family (ie, twins and other siblings) with generalized estimating equations. RESULTS: Children with chronic illness had worse general health than those without illness (adjusted b = 21.20; 95% confidence interval: 22.49 to 0.09). By contrast, children with chronic illness had similar levels of life satisfaction (adjusted b = 2.19; 95% confidence interval: 21.25 to 0.87). Additionally, children's psychological stress had the strongest negative association with both outcomes, even after adjusting for demographics and family environmental stressors. CONCLUSIONS: Although children with chronic illness have lower parent-reported general health, their life satisfaction appears comparable with that of peers without chronic illness. With this study, we provide evidence that chronic illnesses do not preclude children from leading happy and satisfying lives.

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Section: Discussionmentioning

confidence: 99%

General Health and Life Satisfaction in Children With Chronic Illness

et al. 2019

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“…43 At the time of diagnosis, children and families must take in information regarding the child's immediate treatment needs, which can feel confusing and frustrating, but also consider the possible impact of the diagnosis on the child's future. 44 The daily experience of living with a LTC can be physically unpleasant for CYP, and this may have a detrimental effect on their mental health via several mechanisms. Venning et al 45 conducted a qualitative metasynthesis focusing on the experiences of children diagnosed with a LTC and noted how LTCs made children 'feel uncomfortable in their body and the world'.…”

Section: How Long-term Physical Conditions May Increase Risk Of Mentamentioning

confidence: 99%

Interventions to improve the mental health of children and young people with long-term physical conditions: linked evidence syntheses

Moore

Nunns

Shaw

et al. 2019

Health Technol Assess

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Background Although mental health difficulties can severely complicate the lives of children and young people (CYP) with long-term physical conditions (LTCs), there is a lack of evidence about the effectiveness of interventions to treat them. Objectives To evaluate the clinical effectiveness and cost-effectiveness of interventions aiming to improve the mental health of CYP with LTCs (review 1) and explore the factors that may enhance or limit their delivery (review 2). Data sources For review 1, 13 electronic databases were searched, including MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials (CENTRAL), Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Science Citation Index. For review 2, MEDLINE, PsycINFO and CINAHL were searched. Supplementary searches, author contact and grey literature searches were also conducted. Review methods The first systematic review sought randomised controlled trials (RCTs) and economic evaluations of interventions to improve elevated symptoms of mental ill health in CYP with LTCs. Effect sizes for each outcome were calculated post intervention (Cohen’s d). When appropriate, random-effects meta-analyses produced pooled effect sizes (d). Review 2 located primary qualitative studies exploring experiences of CYP with LTCs, their families and/or practitioners, regarding interventions aiming to improve the mental health and well-being of CYP with LTCs. Synthesis followed the principles of metaethnography. An overarching synthesis integrated the findings from review 1 and review 2 using a deductive approach. End-user involvement, including topic experts and CYP with LTCs and their parents, was a feature throughout the project. Results Review 1 synthesised 25 RCTs evaluating 11 types of intervention, sampling 12 different LTCs. Tentative evidence from seven studies suggests that cognitive–behavioural therapy interventions could improve the mental health of CYP with certain LTCs. Intervention–LTC dyads were diverse, with few opportunities to meta-analyse. No economic evaluations were located. Review 2 synthesised 57 studies evaluating 21 types of intervention. Most studies were of individuals with cancer, a human immunodeficiency virus (HIV) infection or mixed LTCs. Interventions often aimed to improve broader mental health and well-being, rather than symptoms of mental health disorder. The metaethnography identified five main constructs, described in an explanatory line of argument model of the experience of interventions. Nine overarching synthesis categories emerged from the integrated evidence, raising implications for future research. Limitations Review 1 conclusions were limited by the lack of evidence about intervention effectiveness. No relevant economic evaluations were located. There were no UK studies included in review 1, limiting the applicability of findings. The mental health status of participants in review 2 was usually unknown, limiting comparability with review 1. The different evidence identified by the two systematic reviews challenged the overarching synthesis. Conclusions There is a relatively small amount of comparable evidence for the effectiveness of interventions for the mental health of CYP with LTCs. Qualitative evidence provided insight into the experiences that intervention deliverers and recipients valued. Future research should evaluate potentially effective intervention components in high-quality RCTs integrating process evaluations. End-user involvement enriched the project. Study registration This study is registered as PROSPERO CRD42011001716. Funding The National Institute for Health Research (NIHR) Health Technology Assessment programme and the NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula.

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“…Of the instruments included, 1 development paper was not in English 27 and we were unable to access 7 original papers. 26,[28][29][30][31][32][33] However, subsequent development and validation studies provided sufficient information to include these instruments. Eighty-eight instruments used qualitative development approaches, details of which are presented in Tables 2 and 3.…”

Section: Resultsmentioning

confidence: 99%