Siblings of Individuals with Disabilities who Enter Careers in the Disability Field

Chambers, Cynthia R.

doi:10.1177/088840640703000301

Cited by 9 publications

(6 citation statements)

References 5 publications

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“…The net financial impact of universal or targeted cCMV screening was calculated as the sum of the screening-related costs (Table 1) and the difference between the hearing loss–related costs derived from the Special Education Expenditure Project (Table 2) with and without screening. We assumed the following 2 screening effects: (1) an improvement in hearing owing to antiviral therapy for infants with clinical manifestations of cCMV infection at birth and (2) benefits resulting from earlier identification of hearing loss and earlier interventions.…”

Section: Resultssupporting

confidence: 88%

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Cost-effectiveness of Universal and Targeted Newborn Screening for Congenital Cytomegalovirus Infection

et al. 2016

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IMPORTANCE Congenital cytomegalovirus (cCMV) infection is a major cause of childhood deafness. Most cCMV infections are not diagnosed without newborn screening, resulting in missed opportunities for directed care.OBJECTIVE To estimate the cost-effectiveness of universal and targeted newborn cCMV screening programs compared with no cCMV screening. DESIGN, SETTING, AND PARTICIPANTS Models were constructed using rates and outcomes from prospective cohort studies of newborn cCMV screening in US postpartum care and early hearing programs. Costs of laboratory testing, treatment, and hearing loss were drawn from Medicaid data and published estimates. The benefits of cCMV screening were assumed to come from antiviral therapy for affected newborns to reduce hearing loss and from earlier identification of hearing loss with postnatal onset. Analyses were performed from July 2014 to March 2016.INTERVENTIONS Models compared universal or targeted cCMV screening of newborns with a failed hearing screen, with standard care for cCMV infection. MAIN OUTCOMES AND MEASURESThe incremental costs of identifying 1 cCMV infection, identifying 1 case of cCMV-related hearing loss, and preventing 1 cochlear implant; the incremental reduction in cases of severe to profound hearing loss; and the differences in costs per infant screened by universal or targeted strategies under different assumptions about the effectiveness of antiviral treatment.

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Section: Resultssupporting

confidence: 88%

“…Therapy for school-aged children includes speech therapy and assistance with schooling, such as note taking. Costs are derived from the Special Education Expenditure Project …”

Section: Resultsmentioning

confidence: 99%

Cost-effectiveness of Universal and Targeted Newborn Screening for Congenital Cytomegalovirus Infection

et al. 2016

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“…While career choice has been examined for professionals in healthcare or special education, this study is among the first to shed light on why healthcare professionals choose to work with individuals with IDD (Chambers, 2007; Marks et al, 2005). In addition to asking these professionals about their career motivations, we also examined the presence and impact of specific disability‐related influences, as well as how such experiences operate over one's formative years.…”

Section: Discussionmentioning

confidence: 99%

“…Participants noted that their siblings fostered a desire “to reach their students in ways they had wanted their siblings to have been reached” (Marks et al, 2005). In this case, and in the cases of other professionals (Chambers, 2007), a passion for working in special education resulted from experiences of having a sibling with IDD.…”

Section: Introductionmentioning

confidence: 99%

How I got here: Career influences on healthcare professionals who work with persons with intellectual and developmental disabilities

McCann

Smith

Urbano

et al. 2023

Policy Practice Intel Disabi

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Although increasing the healthcare workforce serving those with intellectual and developmental disabilities (IDD) remains critical, we know little about how current healthcare workers began serving this population. Surveying 153 U.S.‐based healthcare professionals who work with persons with IDD, this study examined the presence, influence, and nature of their disability‐related experiences. The most common and influential experiences involved pre‐ and post‐professional disability training. Less frequent, albeit influential, experiences included being a sibling or having other family members with disabilities and working at disability‐related camps. First encounters with persons with IDD occurred during the child and adolescent (i.e., preprofessional) years for 38% of respondents, with slightly lower percentages occurring earlier (34%, involving family) or later (28%, during pre‐ or post‐professional training). Those with family or child–adolescent first encounters more often also reported disability experiences in subsequent periods. Respondents spoke of the formative effects of hands‐on disability training as well as of family and child–adolescent experiences, although some disability‐related careers also featured an element of chance. Practical and policy implications are discussed.

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“…A qualitative research approach is particularly useful for fields in which little is known about phenomena under investigation (Loberg 2009). This approach can provide insights into participants' perspectives about the phenomenon and highlights what is important for participants (Berkwits and Inui 1998;Chambers 2007). There is a lack of knowledge about mothering a child with PWS and support, which is provided by the formal support system.…”

Section: Methodsmentioning

confidence: 99%

Being a Mother of a Child with Prader-Willi Syndrome: Experiences of Accessing and Using Formal Support in Croatia

Buljevac

Leutar

2018

Scandinavian Journal of Disability Research

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The aim of this qualitative study is to obtain insight into the experiences of mothers of children with PWS with the formal support system in Croatia. The study was conducted in 2013 with five mothers of children with PWS. Thematic analysis was used as the analytic method. The results highlight four major themes related to mothers' experience of accessing and using formal support: professionals' lack of knowledge about PWS results in living without support; professionals' lack of empathy; professionals' commitment to improve the well-being of families; and getting support through membership in the Association of Persons with PWS Croatia. The social support in Croatia is defined by the lack of knowledge and lack of empathy of professionals, which results in disrespect for the human rights and dignity of children with PWS. Raising the awareness about PWS is crucial for improving the quality of life of families living with PWS.

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Siblings of Individuals with Disabilities who Enter Careers in the Disability Field

Cited by 9 publications

References 5 publications

Cost-effectiveness of Universal and Targeted Newborn Screening for Congenital Cytomegalovirus Infection

Cost-effectiveness of Universal and Targeted Newborn Screening for Congenital Cytomegalovirus Infection

How I got here: Career influences on healthcare professionals who work with persons with intellectual and developmental disabilities

Being a Mother of a Child with Prader-Willi Syndrome: Experiences of Accessing and Using Formal Support in Croatia

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