Dataset Information

Meta-Analysis: Caregiver and Youth Uncertainty in Pediatric Chronic Illness.

ABSTRACT:

Objective

To conduct a systematic review on the construct of illness uncertainty in caregivers and youth as related to the following: demographic and illness variables, psychological functioning, illness-related distress, and reaction/coping style.

Methods

A meta-analysis was conducted with articles assessing the associations between illness uncertainty and variables of interest that were published between November 1983 and June 2016 ( n = 58).

Results

Psychological functioning and illness-related distress had primarily medium effect sizes. Demographic and illness variables had small effect sizes. More positive and fewer negative reaction/coping styles were associated with less illness uncertainty, with primarily small effects.

Conclusions

Illness uncertainty may be an important factor that influences psychological functioning and distress and coping in the context of pediatric chronic illness. However, additional research is needed to determine more precise mean effect sizes, as well as the potential efficacy of intervention to address uncertainty. adolescents, children, chronic illness, coping skills and adjustment, meta-analysis, parents, psychosocial functioning.

SUBMITTER: Szulczewski L

PROVIDER: S-EPMC6440270 | biostudies-literature | 2017 May

REPOSITORIES: biostudies-literature

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Publications

Meta-Analysis: Caregiver and Youth Uncertainty in Pediatric Chronic Illness.

Szulczewski Lauren L Mullins Larry L LL Bidwell Sarah L SL Eddington Angelica R AR Pai Ahna L H ALH

Journal of pediatric psychology 20170501 4

<h4>Objective</h4>To conduct a systematic review on the construct of illness uncertainty in caregivers and youth as related to the following: demographic and illness variables, psychological functioning, illness-related distress, and reaction/coping style.<h4>Methods</h4>A meta-analysis was conducted with articles assessing the associations between illness uncertainty and variables of interest that were published between November 1983 and June 2016 ( n = 58).<h4>Results</h4>Psychological functio ...[more]

PMID: 28177514

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Project description:BackgroundPediatric critical care is often accompanied by a variety of functional impairments. Preliminary evidence suggests children's participation in home activities has a slow trajectory post-pediatric intensive care unit (PICU) discharge, however, additional and more granular knowledge on specific problematic activities is needed to inform patient-centric rehabilitative care. The objectives of this study are to identify common home activities in which caregivers' report dissatisfaction and to determine predictors of caregivers' dissatisfaction with their child's participation in home activities post-PICU discharge.MethodsSecondary analyses of data from a prospective cohort study, the Wee-Cover study, using a subsample of caregivers (N = 170) of children 1-17 years, admitted to a PICU ≥48 h with data on our primary outcome measure from at least one time point. Data were gathered at enrollment and at 3 and 6 months post-PICU discharge. Caregivers reported on their dissatisfaction with their child's participation in home activities via the Participation and Environment Measure. Common activities were identified by plotting caregiver dissatisfaction for each activity pre-and post-PICU, reporting activities in which ≥50% of caregivers reported dissatisfaction with post-PICU, and assessing for significantly different dissatisfaction levels between time-points for each activity. Predictors of caregiver dissatisfaction were assessed using Poisson generalized estimated equation models.ResultsThere was variability in reported dissatisfaction across all activities; ≥50% of caregivers reported dissatisfaction with five activities, including getting clean, personal care management, and mealtime for younger children and household chores and homework for school-aged children and youth. Four activities had significantly higher caregiver dissatisfaction post-PICU: sleep (children < 5 years), homework, indoor play and games, and computer/video games (children ≥5 years). Home environmental support and the interaction of having participation-focused strategies with receiving PICU-based rehabilitation services were negatively associated with caregiver dissatisfaction. Increased caregiver stress and functional performance were associated with increased dissatisfaction.ConclusionsIndividualized PICU-based rehabilitation services to determine family priorities and develop participation-focused strategies, specifically those increasing environmental supports within the home, may ease the family's transition home post-PICU.Trial registrationClinicalTrials.gov Identifier NCT02148081 05/28/2014.

Project description:IntroductionFamily and friends of seriously ill patients are key partners in providing support and health care at home, managing relationships with clinicians, and navigating complex health care systems. Becoming a knowledgeable, confident, and effective caregiver is a developmental process we term 'caregiver activation' and could be facilitated by clinicians equipped with suitable tools. Managing Your Loved One's Health (MYLOH) is a new tool to identify gaps in caregivers' knowledge, skills, and access to clinical and personal support. Created in partnership with caregivers and clinicians, MYLOH items reflect the essential dimensions of caregiving and can be used to tailor caregiver coaching to domains of greatest need. In this study, we extend MYLOH's initial focus on dementia care to caregivers of patients with other chronic life-limiting illnesses.MethodsMYLOH was completed by primary caregivers (n = 190) of people with a range of advanced chronic illnesses enrolled in the LifeCourse study, an innovative, whole-person approach to health management. Item relevance and responses were compared by group across MYLOH items and domains using z-tests for equality of proportions.ResultsAll MYLOH items were relevant to caregiving for all types of chronic illness; only 13% of caregivers answered "not my responsibility" to any question. MYLOH identified caregiving struggles across patient diagnosis groups with a few, disease-specific 'hotspots'. Overall, 64% of caregivers scored low in activation on at least one healthcare management task, especially getting enough help with caregiving, managing everyday caregiving tasks, understanding/managing medications, and knowing how to respond to rapid changes in care recipients' health status. No difficulty was unique to a specific type of care recipient illness.ConclusionsMYLOH has potential as a tool for identifying caregiver coaching and support needs in managing a range of serious chronic illnesses. Caregiving difficulties endorsed by over 20% of caregivers should be core components of chronic illness management programs regardless of disease focus, with disease-specific tailoring as required. MYLOH may be useful in evaluating caregiver interventions and health systems' performance in integrating caregivers into the care management of patients with complex life-limiting illness.

Dataset Information

Meta-Analysis: Caregiver and Youth Uncertainty in Pediatric Chronic Illness.

Objective

Methods

Results

Conclusions

Publications

Meta-Analysis: Caregiver and Youth Uncertainty in Pediatric Chronic Illness.

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