What are the components of effective chronic condition self-management education interventions for children with asthma, cystic fibrosis, and diabetes? A systematic review

Saxby, Nicole; Beggs, Sean; Battersby, Malcolm; Lawn, Sharon

doi:10.1016/j.pec.2018.11.001

Cited by 28 publications

(15 citation statements)

References 42 publications

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“…Measuring a patient’s level of self-care using an assessment instrument represents, for the clinician, the first step to identifying educational gaps and factors hindering the engagement process ( 82 ). Healthcare providers play an important role in fostering autonomy using educational strategies that take into consideration developmental stages and family support ( 83 – 85 ). Educational interventions have resulted in improvements in health outcomes, knowledge related to the chronic condition, quality of life, attendance at school, participation in social activities, and a decrease in health service interactions ( 86 – 88 ).…”

Section: Discussionmentioning

confidence: 99%

Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review

et al. 2022

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Children and young adults (CYAs) with chronic conditions need to engage in self-care to improve their quality of life. This study aimed to retrieve the literature on instruments to assess self-care in CYAs living with chronic conditions and evaluate the psychometric proprieties of the instruments retrieved. A systematic literature review was conducted on six databases to identify peer-reviewed papers that described or used an evaluation instrument of self-care in CYAs with chronic conditions. Twenty-three articles describing 11 instruments of self-care were identified. Five instruments (45.45%) were developed for specific diseases, while six (54.54%) for various chronic illnesses. Most of the instruments were focused on treatment adherence within self-care maintenance (i.e., behaviors to maintain illness stability), excluding the monitoring of clinical parameters or the management of exacerbations. This review provides an overview of available instruments that measure self-care in CYAs with chronic conditions, which health professionals could use for patient education.

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Section: Discussionmentioning

confidence: 99%

Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review

et al. 2022

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“…Literature examining pediatric chronic illness decision-making reveals dissimilarities in parent-youth perceptions, particularly regarding the illness’s impact on the youth’s life and who adopts the main responsibility for illness management (Heyduck et al, 2015). With the use of age/developmentally-appropriate education approaches to illness self-management (Saxby et al, 2019), youth are capable of making effective decisions about illness management (Krockow et al, 2019). Recognizing youth as active participants in illness decisions is associated with greater agency (Law et al, 2014; Wakefield et al, 2011).…”

Section: Introductionmentioning

confidence: 99%

The centrality of disclosure decisions to the illness experience for youth with chronic conditions: A qualitative study

et al. 2020

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The aim of this paper is to illuminate findings of disclosure experiences for youth living with chronic illness using a non-categorical approach. The findings were derived from a larger qualitative study framed by social constructivist grounded theory that sought to understand youth’s involvement in healthcare decision-making in the context of chronic illness. Fifty-four youth participated in the study, ranging from 9 to 24 years. Three main themes representing the youth’s perspectives and experiences of disclosing chronic illness were identified: (1) disclosure is central to the illness experience; (2) spectrum of disclosure; and (3) navigating others’ reactions to disclosure. The findings reinforce that more emphasis on decisions related to disclosing illness in research and clinical care for youth with chronic conditions is warranted.

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“…In these guidelines, six studies were quoted as evidence for providing developmentally appropriately CCSM education. 10,39–43 A further literature search by our research group (submitted for publication elsewhere), 47 however, revealed that there are several additional randomised controlled trials in children with asthma, T1DM and CF (with statistically significant results) which were not referenced by the guideline authors. 11,48–59 Common themes for delivering developmentally appropriate education to children are: Age-appropriate stages of developmental psychology must be followed, with children being directly involved in CCSM from infancy through to adulthood. Educational programs should be tailored specifically for infants, school-aged children, younger adolescents, older adolescents and adult caregivers. CCSM should be facilitated in conjunction with self-efficacy. Structured written curriculum is beneficial, with modular components building on CCSM skills that have been previously learnt by children. Curriculum topics should include – knowledge of condition, impact of condition, symptom monitoring, responding to symptoms, actively participating in their own clinical care, being able to use a written action plan, lifestyle, and accessing support services. Problem-solving and decision-making should be emphasised and Using play, role playing and arts-based activities may facilitate the learning of infants and school aged children. …”

Section: Discussionmentioning

confidence: 98%

Do guidelines provide evidence-based guidance to health professionals on promoting developmentally appropriate chronic condition self-management in children? A systematic review

Saxby

Beggs²,

Kariyawasam

et al. 2018

Chronic Illness

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Objectives To determine whether evidence-based practice guidelines promote developmentally appropriate chronic condition self-management for children with asthma, type 1 diabetes mellitus, and cystic fibrosis. Methods Systematic review of clinical guidelines current as at 22 September 2017, including assessment of quality of each guideline using the iCAHE ‘Guideline Quality Checklist’, and mapping of the supporting evidence. Results Fifteen guidelines were identified: asthma ( n=7) and type 1 diabetes mellitus ( n=7), CF ( n=1). Guideline quality was variable, and 11 different grading systems were used. In total, there were 28 recommendations promoting age/developmental considerations. Recommendations focused on: collaboration ( n=15), chronic condition self-management education ( n= 17), clinicians’ skills ( n= 4); personalized action plans ( n=3), problem-solving ( n=2); and the assessment of children’s chronic condition self-management needs ( n=3). Developmental transitions are highlighted as important time points in some guidelines: preschool ( n=2), and adolescence ( n=3). All guidelines encouraged triadic partnerships between children, adult caregivers and clinicians. Evidence supporting the developmental aspects of the guidelines’ recommendations was poor; only 14 out of 57 journals listed as evidence were concordant. Discussion Current guidelines articulate that developmentally appropriate chronic condition self-management is important; however, more work needs to be done to translate the concept into practical clinical tools.

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What are the components of effective chronic condition self-management education interventions for children with asthma, cystic fibrosis, and diabetes? A systematic review

Cited by 28 publications

References 42 publications

Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review

Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review

The centrality of disclosure decisions to the illness experience for youth with chronic conditions: A qualitative study

Do guidelines provide evidence-based guidance to health professionals on promoting developmentally appropriate chronic condition self-management in children? A systematic review

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