Parents' Reports of Barriers to Care for Children With Special Health Care Needs: Development and Validation of the Barriers to Care Questionnaire

Seid, Michael; Sobo, Elisa J.; Gelhard, Leticia Reyes; Varni, James W.

doi:10.1367/a03-198r.1

Cited by 82 publications

(127 citation statements)

References 62 publications

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“…Subscales of the PedsQL also demonstrated adequate to high internal consistency (a 5 .78-.89). Research has shown the usefulness of the PedsQL for clinical decision making (de Wit et al, 2008;Seid, Sobo, Gelhard, & Varni, 2004;Seid et al, 2001;Seid, Varni, Segall, & Kurtin, 2004), and the reliability and validity found within the present study provide evidence for the utility of the total score as a clinical measure within the IDD population and the utility of the subscales and total score for group level research within the population.…”

Section: Discussionsupporting

confidence: 65%

Reliability and Validity of the Pediatric Quality of Life Inventory With Individuals With Intellectual and Developmental Disabilities

Viecili¹,

Weiss²

2015

American Journal on Intellectual and Developmental Disabilities

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The Pediatric Quality of Life Inventory (PedsQL) measures health-related quality of life, a growing area of research, particularly among individuals with disabilities. This research is necessary to fully understand the varied needs of the population and, ultimately, ensure that those needs are being met. The current study assessed the reliability and validity of the PedsQL in individuals with intellectual and developmental disabilities, including individuals with autism spectrum disorder. Participants included 359 caregivers of children, youth, and young adults with IDD. Caregivers completed the PedsQL 4.0 Generic Core Scales questions regarding the individual's physical health and the Strengths and Difficulties Questionnaire. The PedsQL achieved excellent reliability across scales, and distinguished healthy individuals from those with chronic health conditions, as well as individuals with ASD from those without. Factor analysis confirmed a 5-factor model, with moderate to high criterion validity. The PedsQL shows sound psychometric properties and may be a useful tool to measure psychosocial functioning in this population.

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Section: Discussionsupporting

confidence: 65%

Reliability and Validity of the Pediatric Quality of Life Inventory With Individuals With Intellectual and Developmental Disabilities

Viecili¹,

Weiss²

2015

American Journal on Intellectual and Developmental Disabilities

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“…Further, the quantitative BCQ generated as part of the research described here (Seid et al 2004) is a better tool than it otherwise would be.…”

Section: Resultsmentioning

confidence: 99%

“…We used these groups to gather information on process variables that the marker variables from the school study described above might be marking, and to devise a barriers to care questionnaire (BCQ) to measure their intensity for large populations (Seid et al 2004).…”

Section: Maximizing Qualitative Methods For Health Services Researchmentioning

confidence: 99%

“…Throughout the health care journey, which often ended with perceived suboptimal care leading to a sense of deprivation and distrust (''marginalization''; see Seid et al 2004;Kreps 1996), parents endured a sense of the system's fragmentation and arbitrariness. In other words, and as represented in the horizontal bar running across the health system box in Figure 1, rules changed from visit to visit (''change like the wind''), fees were inconsistent (''It all depends on who is there''), records were not sent from the lab to the office, referrals were delayed or not forthcoming, and paperwork went missing.…”

Section: Parents Also Dealt With What They Saw As Inexcusable Incompementioning

confidence: 99%

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Parent‐Identified Barriers to Pediatric Health Care: A Process‐Oriented Model

Sobo

Seid²,

Gelhard³

2005

Health Services Research

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Objective. To further understand barriers to care as experienced by health care consumers, and to demonstrate the importance of conjoining qualitative and quantitative health services research. Data Sources. Transcripts from focus groups conducted in San Diego with Englishand Spanish-speaking parents of children with special health care needs. Study Design. Participants were asked about the barriers to care they had experienced or perceived, and their strategies for overcoming these barriers. Using elementary anthropological discourse analysis techniques, a process-based conceptual model of the parent experience was devised. Principal Findings. The analysis revealed a parent-motivated model of barriers to care that enriched our understanding of quantitative findings regarding the population from which the focus group sample was drawn. Parent-identified barriers were grouped into the following six temporally and spatially sequenced categories: necessary skills and prerequisites for gaining access to the system; realizing access once it is gained; front office experiences; interactions with physicians; system arbitrariness and fragmentation; outcomes that affect future interaction with the system. Key to the successful navigation of the system was parents' functional biomedical acculturation; this construct likens the biomedical health services system to a cultural system within which all parents/patients must learn to function competently. Conclusions. Qualitative analysis of focus group data enabled a deeper understanding of barriers to care--one that went beyond the traditional association of marker variables with poor outcomes (''what'') to reveal an understanding of the processes by which parents experience the health care system (''how,'' ''why'') and by which disparities may arise. Development of such process-oriented models furthers the provision of patientcentered care and the creation of interventions, programs, and curricula to enhance such care. Qualitative discourse analysis, for example using this project's widely applicable protocol for generating experientially based models, can enhance our knowledge of the parent/patient experience and aid in the development of more powerful conceptualizations of key health care constructs.

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“…The PedsQL 4.0 Generic Core Scales has been shown to distinguish between healthy children and children with pediatric chronic health conditions, has demonstrated sensitivity to disease severity and responsiveness through patient change over time, and evidenced significant intercorrelations with disease-specific symptom scales (Bastiaansen et al 2004a, b;Chan et al 2005;Crabtree et al 2004;Felder-Puig et al 2004;Powers et al 2004;Razzouk et al 2004;Schwimmer et al 2003;Upton et al 2005;Uzark et al 2003;Varni et al 2001Varni et al , 2002aVarni et al , b, c, 2003aVarni et al , b, 2004aWilliams et al 2005;Youssef et al 2004). Further, the PedsQL 4.0 has been shown to have an impact on clinical decision-making (de Wit et al 2008;Seid et al 2001Seid et al , 2004aVarni et al 2002b, c). For example, in a recent study (de Wit et al 2008), adolescents with type I diabetes completed the PedsQL TM 4.0 Generic Core Scales on a computer before consultation with their pediatrician at three office visits.…”

Section: Introductionmentioning

confidence: 99%

Health-Related Quality of Life and Cognitive Functioning from the Perspective of Parents of School-Aged Children with Asperger’s Syndrome Utilizing the PedsQL™

Limbers

Heffer

Varni

2009

J Autism Dev Disord

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HRQOL as a multidimensional construct has not been previously investigated in children with Asperger's Syndrome. The objective of the present study was to examine the initial feasibility, reliability, and validity of the PedsQL 4.0 Generic Core Scales and PedsQL Cognitive Functioning Scale parent proxy-report versions in school-aged children with Asperger's Syndrome. The PedsQL evidenced no missing responses (0.0%), achieved excellent reliability for the Generic Core Total Scale score (alpha = 0.82) and Cognitive Functioning Scale (alpha = 0.92), distinguished between children with Asperger's Syndrome and a matched sample of healthy children, and was related to similar constructs on the Asperger Syndrome Diagnostic Scale. The results demonstrate the initial measurement properties of the PedsQL in school-aged children with Asperger's Syndrome.

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Parents' Reports of Barriers to Care for Children With Special Health Care Needs: Development and Validation of the Barriers to Care Questionnaire

Cited by 82 publications

References 62 publications

Reliability and Validity of the Pediatric Quality of Life Inventory With Individuals With Intellectual and Developmental Disabilities

Reliability and Validity of the Pediatric Quality of Life Inventory With Individuals With Intellectual and Developmental Disabilities

Parent‐Identified Barriers to Pediatric Health Care: A Process‐Oriented Model

Health-Related Quality of Life and Cognitive Functioning from the Perspective of Parents of School-Aged Children with Asperger’s Syndrome Utilizing the PedsQL™

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