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Respite care services for children with special healthcare needs: Parental perceptions.

ABSTRACT: PURPOSE:Parents of children with special healthcare needs may become overwhelmed with the ongoing caregiving needs of their children. Caring for a child with special healthcare needs is often challenging, requiring specialized training in many cases. As a result, parents can struggle to find qualified caregivers capable of providing them a break from the 24/7 care of their child. Respite care programs are designed to provide caregivers with a much-needed temporary break. The purpose of this study was to examine parental perceptions of utilizing a respite care program. DESIGN AND METHODS:Twenty-two parents who had a child with special healthcare needs who attended a Midwestern respite care program completed a Participant Characteristic Form addressing their experiences caring for their child with special healthcare needs and using respite care services. Parents participated in a focus group (N = 4) to explore their perceptions and experiences of respite care participation. Multistage thematic analysis and descriptive statistics were used to analyze the data. RESULTS:Themes emerging from the data included: Constant care demands; It is just so stressful; Respite is a gift, we get a break; Respite program "fit"; and Respite is their special time too. Parents emphasized the benefits of respite care for their marital relationship, as well as the benefits to the children with special healthcare needs and their siblings. Parents also described the importance of tailoring respite care to the unique needs of their family. PRACTICE IMPLICATIONS:Nurses and other healthcare professionals play a critical role in addressing the unmet respite care needs of parents of children with special healthcare needs by identifying unmet needs and making appropriate referrals to services that will meet the unique needs of the family. Healthcare professionals can also volunteer with existing programs to help expand access to respite care services and increase the availability of adequately trained respite care providers whom parents can trust to provide for the complex healthcare needs of their children.

SUBMITTER: Whitmore KE

PROVIDER: S-EPMC6202162 | biostudies-literature | 2018 Jul

REPOSITORIES: biostudies-literature

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Respite care services for children with special healthcare needs: Parental perceptions.

Whitmore Kim E KE Snethen Julia J

Journal for specialists in pediatric nursing : JSPN 20180426 3

<h4>Purpose</h4>Parents of children with special healthcare needs may become overwhelmed with the ongoing caregiving needs of their children. Caring for a child with special healthcare needs is often challenging, requiring specialized training in many cases. As a result, parents can struggle to find qualified caregivers capable of providing them a break from the 24/7 care of their child. Respite care programs are designed to provide caregivers with a much-needed temporary break. The purpose of t ...[more]

PMID: 29697186

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Project description:BackgroundChildren and adolescents with special health care needs (SHCN) have higher unmet dental needs, but the potential mechanisms by which parental factors can influence dental care use have not been determined. Parenting a child with SHCN can present special demands that affect parents' well-being and, in turn, their caregiving. Hence, the study's overall aim was to apply the stress process model to examine the role of parental psychosocial factors in the association between child SHCN and dental care. Specifically, the study tested hypotheses regarding how (a) children's SHCN status is associated with child dental care (unmet dental needs and lack of preventive dental visits), both directly and indirectly via parental psychosocial factors (parenting stress, instrumental, and emotional social support) and (b) parental social support buffers the association between parenting stress and child dental care.MethodsA secondary data analysis of the 2011-2012 US National Survey of Children's Health was performed for 6- to 11-year-old children (n = 27,874) and 12- to 17-year-old adolescents (n = 31,328). Our age-stratified models estimated associations between child SHCN status and parental psychosocial factors with two child dental care outcomes: parent-reported unmet child dental needs and lack of preventive dental care.ResultsParents of children with (vs without) SHCN reported higher unmet child dental needs, higher parenting stress, and lower social support (instrumental and emotional). Instrumental, but not emotional, parental support was associated with lower odds of their child unmet dental needs in both age groups. The association between parenting stress and child dental care outcomes was modified by parental social support.ConclusionDifferences existed in child unmet dental needs based on SHCN status, even after adjusting for parental psychosocial factors. SHCN status was indirectly associated with unmet dental needs via parental instrumental support among adolescents, and parental instrumental support buffered the negative association between parenting stress and both child dental care outcomes. Hence, parental social support was an important determinant of child dental care and partially explained the dental care disparities in adolescents with SHCN.

Project description:ObjectiveTo examine the effectiveness of hospital-based comprehensive care programs in improving the quality of care for children with special health care needs.Data sourcesA systematic review was conducted using Ovid MEDLINE, CINAHL, EMBASE, PsycINFO, Sociological Abstracts SocioFile, and Web of Science.Study selectionEvaluations of comprehensive care programs for categorical (those with single disease) and noncategorical groups of children with special health care needs were included. Selected articles were reviewed independently by 2 raters.Data extractionModels of care focused on comprehensive care based at least partially in a hospital setting. The main outcome measures were the proportions of studies demonstrating improvement in the Institute of Medicine's quality-of-care domains (effectiveness of care, efficiency of care, patient or family centeredness, patient safety, timeliness of care, and equity of care).Data synthesisThirty-three unique programs were included, 13 (39%) of which were randomized controlled trials. Improved outcomes most commonly reported were efficiency of care (64% [49 of 76 outcomes]), effectiveness of care (60% [57 of 95 outcomes]), and patient or family centeredness (53% [10 of 19 outcomes). Outcomes less commonly evaluated were patient safety (9% [3 of 33 programs]), timeliness of care (6% [2 of 33 programs]), and equity of care (0%). Randomized controlled trials occurred more frequently in studies evaluating categorical vs noncategorical disease populations (11 of 17 [65%] vs 2 of 16 [17%], P = .008).ConclusionsAlthough positive, the evidence supporting comprehensive hospital-based programs for children with special health care needs is restricted primarily to nonexperimental studies of children with categorical diseases and is limited by inadequate outcome measures. Additional high-quality evidence with appropriate comparative groups and broad outcomes is necessary to justify continued development and growth of programs for broad groups of children with special health care needs.

Dataset Information

Respite care services for children with special healthcare needs: Parental perceptions.

Publications

Respite care services for children with special healthcare needs: Parental perceptions.

Similar Datasets

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