Dataset Information

Self-Management, Self-Efficacy, and Health-Related Quality of Life in Children With Chronic Illness and Medical Complexity.

ABSTRACT:

Introduction

Children with chronic illnesses and medical complexity (CIMC) require frequent health-care use, thereby increasing medical care costs. We evaluated parent-child perceptions of self-management, self-efficacy, and health-related quality of life (HRQOL) in children with CIMC.

Method

Parent-children pairs (n = 32) completed three measures before discharge from the hospital (Patient Activation Measure, Self-Efficacy Scale, and Acute Care-Pediatric Quality of Life for Children 8-12 and 13-17 years).

Results

Parents (56.3%) and children (40.6%) reported moderate levels of self-management. HRQOL was correlated with both self-management (r = .441, p = .12) and self-efficacy (r = .464, p = .008). At least 25% to 50% reported low PedsQL subscale scores (< 70), which indicate problems with physical, emotional, social, and mental domains.

Discussion

Our findings support the assessment of not only physical but also mental, emotional, and social needs in children with CIMC. We recommend development and testing strategies promoting self-management and self-efficacy to maximize HRQOL and improve health outcomes in children with CIMC.

SUBMITTER: Bravo L

PROVIDER: S-EPMC8381929 | biostudies-literature | 2020 Jul - Aug

REPOSITORIES: biostudies-literature

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Publications

Self-Management, Self-Efficacy, and Health-Related Quality of Life in Children With Chronic Illness and Medical Complexity.

Bravo Lilian L Killela Mary K MK Reyes Beck L BL Santos Karla Marie Bathan KMB Torres Vanessa V Huang Chai-Chih CC Jacob Eufemia E

Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners 20200225 4

<h4>Introduction</h4>Children with chronic illnesses and medical complexity (CIMC) require frequent health-care use, thereby increasing medical care costs. We evaluated parent-child perceptions of self-management, self-efficacy, and health-related quality of life (HRQOL) in children with CIMC.<h4>Method</h4>Parent-children pairs (n = 32) completed three measures before discharge from the hospital (Patient Activation Measure, Self-Efficacy Scale, and Acute Care-Pediatric Quality of Life for Child ...[more]

PMID: 32107073

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Project description:Cognitive variables such as knowledge, attitude, and self-efficacy affect asthma patients' abilities to be effective self-managers.The objective of this cross-sectional analysis was to determine what patient and clinical factors were associated with these cognitive variables and to assess the contributions of these cognitive variables to clinical status.Primary care asthma patients were interviewed using the three domains of the Knowledge, Attitude, and Self-Efficacy Asthma Questionnaire (KASE), as well as established scales to measure social support, depressive symptoms, and ratings of asthma care. Clinical asthma status was measured with the Asthma Quality of Life Questionnaire (AQLQ).In total, 180 patients were enrolled, with a mean age of 43 years and 84% were women. Knowledge was low, with only 50% of patients answering half or more questions correctly (mean score = 52, possible range 0-100, higher is more knowledge). Attitude toward asthma was generally positive (mean score = 82, possible range 20-100, higher is more positive attitude) and self-efficacy was moderate (mean score = 76, possible range 20-100, higher is more self-efficacy). In separate multivariate analyses, younger age and higher education level were associated with more knowledge (p ? .005); more social support, fewer depressive symptoms, and more favorable prior results of asthma care were associated with more positive attitude (p ? .05); and favorable prior results, more satisfaction with asthma status, not having stress-related triggers, and not having had a recent emergency department visit for asthma were associated with more self-efficacy (p ? .07 for all variables). In additional multivariate analyses, more knowledge (p = .0005), more positive attitude (p = .02), and more self-efficacy (p = .01) were associated with better AQLQ scores.Different patient and clinical characteristics were associated with cognitive variables pertinent to self-management. These variables, in turn, were independently associated with asthma status. Thus, although fostering improvement in all three variables would be desirable, interventions that improve any of these variables potentially could be beneficial.

Project description:BACKGROUND:Children with medical complexity (CMC) present rewarding but complex challenges for the health care system. Transforming high-quality care practices for this population requires multiple stakeholders and development of innovative models of care. Importantly, care coordination requires significant self-management by families in home- and community-based settings. Self-management often requires that families of CMC rely on vast and diverse social networks, encompassing both online and offline social relationships with individuals and groups. The result is a support network surrounding the family to help accomplish self-management of medical tasks and care coordination. OBJECTIVE:The goal of this study is to use a theoretically driven perspective to systematically elucidate the range of self-management experiences across families of CMC embedded in diverse social networks and contextual environments. This approach will allow for characterization of the structure and process of self-management of CMC with respect to social networks, both in person and digitally. This research proposal aims to address the significant gaps in the self-management literature surrounding CMC, including the following: (1) how self-management responsibilities are distributed and negotiated among the social network and (2) how individual-, family-, and system-level factors influence self-management approaches for CMC from a theoretically driven perspective. METHODS:This study will encompass a qualitative descriptive approach to understand self-management practices among CMC and their social networks. Data collection and analysis will be guided by a theoretical and methodological framework, which synthesizes perspectives from nursing, human factors engineering, public health, and family counseling. Data collection will consist of semistructured interviews with children, parents, and social network members, inclusive of individuals such as friends, neighbors, and community members, as well as online communities and individuals. Data analysis will consist of a combination of inductive and deductive methods of qualitative content analysis, which will be analyzed at both individual and multiadic levels, where interview data from two or more individuals, focused on the same experience, will be comparatively analyzed. RESULTS:This study will take approximately 18 months to complete. Our long-term goals are to translate the qualitative analysis into (1) health IT design guidance for innovative approaches to self-management and (2) direct policy guidance for families of CMC enrolled in Medicaid and private insurance. CONCLUSIONS:Multiple innovative components of this study will enable us to gain a comprehensive and nuanced understanding of the lived experience of self-management of CMC. In particular, by synthesizing and applying theoretical and methodological approaches from multiple disciplines, we plan to create novel informatics and policy solutions to support their care within home and community settings. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):PRR1-10.2196/14810.

Dataset Information

Self-Management, Self-Efficacy, and Health-Related Quality of Life in Children With Chronic Illness and Medical Complexity.

Introduction

Method

Results

Discussion

Publications

Self-Management, Self-Efficacy, and Health-Related Quality of Life in Children With Chronic Illness and Medical Complexity.

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