Article

“When Everything Changes:” Parent Perspectives on the Challenges of Accessing Care for a Child with a Disability

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Abstract

Health disparities exist among individuals living in rural and urban contexts in terms of access to health care and overall mortality. These disparities are typically greater for youth with disabilities living in rural areas, who face additional barriers in receiving health and support services specific to their disability. Parents are typically the ones responsible for coordinating the care needed by children with a disability; however, with numerous barriers present families are not provided adequate support to care for a child with disabilities. The purpose of this study was to examine barriers and facilitators to accessing health and support services among urban and rural families of children with disabilities. In-depth interviews were conducted with parents who provide care for an adolescent with a disability. The sample was comprised of parents from one rural county (N = 9) and one urban county (N = 10) in Georgia. Parental interviews were conducted face to face by a trained researcher. Each interview was audio-recorded. The recordings were transcribed and content analysis used to create codes and identify emerging themes. The common themes found during the analysis include accessibility of health and support resources, transitions, and social isolation. When comparing urban and rural areas, barriers to access do differ in terms of availability, but analysis revealed more similarities existed among parents from both contexts. Efforts must be made to increase opportunities for youth with disabilities to become connected with the local community in order to improve quality of life for families. Copyright © 2015 Elsevier Inc. All rights reserved.

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... Most of the articles (n = 33) in this synthesis were published in the last five years 2012-2017, thus indicating a recent interest on this topic. Of the 36 studies, 10 were conducted in high income countries, including Australia [37][38][39][40], United States [41][42][43][44] and Canada [45,46]. The remaining 26 studies originated from LMICs primarily from Ethiopia [47][48][49][50][51][52][53][54], South Africa [55][56][57][58][59], India [60,61], Nepal [62,63], Malawi [64], Mexico [65], Namibia [66], Pakistan [67], Tanzania [68], Thailand [69,70] and Vietnam [71]. ...
... The articles also stressed that the provision of public transportation is paramount to health care access [41, 42, 45, 57-59, 62, 65]. Despite this, some of the papers noted that limited public transportation hampered clients' access to health centers and pharmacies [41,42,45,58,65]. For instance one article recounted that 16% (n = 322) of their study participants with disabilities experienced lack of transport to reach health care facilities [59]. ...
... Limited ambulance services also compounded health access challenges in some rural communities [55,56]. As a result, some papers elaborated how clients have to book transport in advance or pay for private transport services in order to access health [41,42,57,58,66]. ...
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Background: Access to primary health care (PHC) is a fundamental human right and central in the performance of health care systems, however persons with disabilities (PWDs) generally experience greater barriers in accessing PHC than the general population. These problems are further exacerbated for those with disabilities in rural areas. Understanding PHC access for PWDs is particularly important as such knowledge can inform policies, clinical practice and future research in rural settings. Methods: We conducted a synthesis of published literature to explore the factors affecting access to PHC for PWDs in rural areas globally. Using an adapted keyword search string we searched five databases (CINAHL, EMBASE, Global Health, Medline and Web of Science), key journals and the reference lists of included articles. We imported the articles into NVivo and conducted deductive (framework) analysis by charting the data into a rural PHC access framework. We subsequently conducted inductive (thematic) analysis. Results: We identified 36 studies that met our inclusion criteria. A majority (n = 26) of the studies were conducted in low-and middle-income countries. We found that PWDs were unable to access PHC due to obstacles including the interplay of four major factors; availability, acceptability, geography and affordability. In particular, limited availability of health care facilities and services and perceived low quality of care meant that those in need of health care services frequently had to travel for care. The barrier of geographic distance was worsened by transportation problems. We also observed that where health services were available most people could not afford the cost. Conclusion: Our synthesis noted that modifying the access framework to incorporate relationships among the barriers might help better conceptualize PHC access challenges and opportunities in rural settings. We also made recommendations for policy development, practice consideration and future research that could lead to more equitable access to health care. Importantly, there is the need for health policies that aim address rural health problems to consider all the dimensions and their interactions. In terms of practice, the review also highlights the need to provide in-service training to health care providers on how to enhance their communication skills with PWDs. Future research should focus on exploring access in geographical contexts with different health care systems, the perspectives of health care providers and how PWDs respond to access problems in rural settings.
... There are several factors that can make accessing appropriate rehabilitation services difficult for rural families. These can include few accessible resources [12], including a lack of qualified professionals in rural areas, thus limiting access to specialized services [13]. When services are available in rural areas, they may not beof the same quality as those found in urban areas [12]. ...
... These can include few accessible resources [12], including a lack of qualified professionals in rural areas, thus limiting access to specialized services [13]. When services are available in rural areas, they may not beof the same quality as those found in urban areas [12]. Because specialized services may not be available, rural families may face costs associated with having to travel to a larger urban center for these services [12,13]. ...
... When services are available in rural areas, they may not beof the same quality as those found in urban areas [12]. Because specialized services may not be available, rural families may face costs associated with having to travel to a larger urban center for these services [12,13]. Socio-economic factors for rural families can also be a considerable barrier to services, as poverty has been identified as a significant problem in rural areas [14]. ...
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Purpose: To identify and describe therapeutic services provided to children and youth with disabilities living in rural areas of mid- and high-income countries and to summarize the benefits, positive outcomes, and challenges related to these services. Methods: This scoping review involved a systematic search of four academic electronic databases: MEDLINE, EMBASE, CINAHL, and Psych INFO, using a combination of subject headings and keywords related to (1) child disabilities; (2) rehabilitation: occupational therapists, speech-language pathologists, physiotherapists, audiologists, and recreation therapists; (3) multidisciplinary care team; (4) rural areas. Charting involved an iterative process whereby the full text articles meeting the inclusion criteria were abstracted using the charting form by two independent reviewers. Results: Thirty-seven articles from seven high-income countries were included in the analysis. Twenty-seven articles reported on in-person services, and 19 on telepractice (nine evaluated in-person and telepractice). In person services included outreach programs and specialized on-site programs. Positive outcomes and challenges of in person and telepractice services in rural areas are described. Conclusions: Findings of this review highlight the need for further research on service delivery models offered in rural areas of upper middle and high-income countries, especially those focusing specifically on the rural communities, with a clear description of services. IMPLICATIONS FOR REHABILITATIONThis scoping review helps to advance the understanding of how therapy services are offered in rural areas of high-income countries.Telepractice was found to enhance ease of access to services for families living in rural areas.The findings of this review suggest that telepractice may be an effective means of providing therapy services to children and youth with disabilities living in rural areas of high-income countries, pending families' access to technology.
... Lower levels of quality of life which include questions regarding depression and stress were found in parents of children with ASD when compared to a control group (Due et al., 2018). Parents in both urban and rural areas identified with the emotion of fear when discussing their child with ASD transitioning into young adulthood, specifically when they age out of the school system (Walker et al., 2016). Social isolation is reported among rural caregivers of children with ASD, along with the fear of increased social isolation when the child transitions out of the school system (Walker et al., 2016). ...
... Parents in both urban and rural areas identified with the emotion of fear when discussing their child with ASD transitioning into young adulthood, specifically when they age out of the school system (Walker et al., 2016). Social isolation is reported among rural caregivers of children with ASD, along with the fear of increased social isolation when the child transitions out of the school system (Walker et al., 2016). Having to adapt emotionally to create success for their child with ASD was a theme that arose in a qualitative study by Gentles et al. (2019) as was the burdens associated with navigating the resources and treatments for their child with ASD created stress. ...
... Formal and informal support resources emerged as important factors in improving mental health and decreasing stress for rural caregivers of children with ASD. In the few studies that made some comparisons between urban and rural caregivers, no major differences were reported between the two groups except, as Walker et al. (2016) noted, that unlike urban parents, those in rural areas reported limited access to resources and services and that the lack of availability was a barrier to quality of life. ...
Article
Problem Caregivers of children with Autism Spectrum Disorder (ASD) report high levels of stress, social isolation, and poor mental health. Social and emotional support may buffer negative effects of stress for caregivers of children with ASD, however, those living in rural areas may be disadvantaged due to social isolation and increased distance from resources. This scoping review examined the literature regarding the mental health and impact of support for rural caregivers of children with ASD. Eligibility criteria Articles were limited to those available in the English language and conducted in a high income country. Articles had to include a population of rural caregivers of children with ASD and focus on caregiver mental health and/or the impact of support on caregiver mental health. Sample Searches were conducted with Embase, PubMed, CINAHL, ERIC, and PsycINFO and 22 articles were included. Results Study findings indicate overall poor mental health for rural caregivers of children with ASD. Formal and informal support appear to be beneficial in decreasing stress for rural caregivers of children with ASD. However, a few studies indicated that formal support may add stress to rural caregivers. Conclusion There is limited information regarding support needs and the impact of support services on the mental health of rural caregivers of children with ASD. Implications There is a need to increase access to support resources in rural areas for caregivers of children with ASD. Healthcare professionals, including nurses, can play a fundamental role in supporting, educating, and connecting caregivers to other support services.
... Selain itu, kebanyakan kajian mengenai pengalaman keibubapaan kanak-kanak kurang upaya di luar bandar telah dijalankan di negara maju (Walker, Alfonso, Colquitt, Weeks & Telfair 2016;Radcliff, Delmelle, Kirby, Laditka, Correia & Cassell, 2016; seperti Australia (Gallego et al. 2016), Eropah dan Amerika Utara (Gona et al. 2016), sementara kurang bukti yang telah dilaporkan dalam negara membangun seperti Malaysia. Kurang juga kajian yang memberi penekanan kepada kekurangan sumber yang dihadapi ibu bapa di luar bandar (Pretorius & Steadman, 2017) terutama di Sabah. ...
... Ada ibu bapa juga mengatakan mereka terpaksa catar kenderaan awam semasa balik ke rumah selepas menghantar anak ke PDK atau hospital (lihat jadual 5). Perkara ini berbeza dengan dapatan kajian lepas yang melaporkan kekurangan pengangkutan awam adalah penyebab kepada kesukaran akses ke atas perkhidmatan kesihatan (Walker, Alfonso, Colquitt, Weeks & Telfair 2016). ...
... Semua ibu bapa di luar bandar dan pedalaman Sabah mengatakan diri mereka mengalami kesukaran dalam mendapatkan rawatan yang berkualiti untuk anaknya. Sebagai perbandingan dengan kajian lepas, literatur hanya melaporkan keperluan tidak dipenuhi, kurang pilihan, lewat dan terlepas mendapat penjagaan kesihatan (Skinner & Slifkin 2007;Dew et al. 2013;Gallego et al. 2016;Rosen-Reynoso et al. 2016;Walker et al. 2016). Kajian tersebut gagal melaporkan impak negatif kurang pilihan ke atas kualiti rawatan yang diterima oleh anak kurang upaya. ...
Article
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ABSTRACT Lack of healthcare facilities is the problem often experienced by parents of rural and remote children with disabilities. To date, very limited studies have examined this issue especially in the context of Sabah. This study was designed to explore the challenges of healthcare for disabled children in rural and remote areas of Sabah. Inductive case study design has been used. Sampling process initiated with purposive sampling followed by theoretical sampling was used to select eight parents. Data analysis has been implemented with the help of Atlas.ti version 8 to capture the themes. Inductive analysis resulted in seven themes explaining the challenges in maintaining the health of children in the rural and remote areas of Sabah namely; the frequency of long-distance travelling in obtaining specialist services, travelling time in getting treatment and intervention for children, transit frequency between public transport, road problems in rural and remote areas, facing with community misunderstanding, local government policy that only places specialist in the main city hospital, and difficulty in obtaining high quality healthcare for the children. The difficulty in maintaining child health has become a major reason for parents' financial problems. In short, parents of children with disabilities in rural and remote areas of Sabah experience various challenges in terms of their child's healthcare. Therefore, the researchers recommend the placement of specialists and therapists for children with disabilities in rural Sabah hospital to reduce the burden on parents. Keywords: Child health care challenges, rural and remote areas, disabled children, grounded theory approach in multiple case study, case study, Sabah
... Individuals living with disabilities, compared to those without, are more negatively impacted by a lack of access to health care services (4). Previously, parents and caregivers cited access to care as one of the primary factors impeding the overall health and quality of life of their family member living with a disability (5). Access to care is mediated by many barriers. ...
... Families have noted that access to many health care services is hindered by cost (6). Many services available to families are not covered by insurance plans, which leaves the burden of cost on family members or requires families to attempt to provide some services at home (5). The American Academy of Pediatrics (7) recommends care coordination as one strategy to alleviate challenges experienced by families caring for CSHCN. ...
... Ease of use is a complex issue and our findings further validate that adequate insurance coverage is one of many facets that should be considered. If the services are not present in the community, require a higher amount of out of pocket expenses, or are in high demand with waiting lists, accessibility is not felt by the families and their children even among those families with adequate insurance (5). Accessibility includes availability and affordability. ...
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The purpose of this study was to examine predictors of coordinated and comprehensive care within a medical home among children with special health care needs (CSHCN). The latest version of the National Survey of Children with Special Health Care Needs (NS-CSHCN) employed a national random-digit-dial sample whereby US households were screened, resulting in 40,242 eligible respondents. Logistic regression analyses were performed modeling the probability of coordinated, comprehensive care in a medical home based on shared decision-making and other factors. A total of 29,845 cases were selected for inclusion in the model. Of these, 17,390 cases (58.3%) met the criteria for coordinated, comprehensive care in a medical home. Access to a community-based service systems had the greatest positive impact on coordinated, comprehensive care in a medical home. Adequate insurance coverage and being White/Caucasian were also positively associated with the dependent variable. Shared decision-making was reported by 72% of respondents and had a negative, but relatively negligible impact on coordinated, comprehensive care in a medical home. Increasing age, non-traditional family structures, urban residence, and public insurance were more influential, and negatively impacted the dependent variable. Providers and their respective organizations should seek to expand and improve health and support services at the community level.
... As such, Shikako-Thomas, Majnemer, Law, and Lach (2008), who conducted a study on youth with cerebral palsy and residing in rural areas, indicate leisure participation of these individuals is related to three central determinants; namely, their physical and mental condition, their living environment, and their families. The main constraints limiting young people with functional limitations to engage in leisure activities in rural areas are physical, financial, and social accessibility (Camirand et al., 2010;Goodridge et al., 2015;Law, Petrenchik, King, & Hurley, 2007;Pretty, Rapley, & Bramston, 2002;Walker, Alfonso, Colquitt, Weeks, & Telfair, 2016). Camirand et al. (2010) add that opportunities for recreational support are often more limited for youth with disabilities living in rural areas, even though local self-help networks may exist. ...
... Management and planning enable individuals with disabilities to reduce their social isolation and live new experiences (Camirand et al., 2010;Collet-Klingenberg & Kolb, 2011;Walker et al., 2016). Our findings are consistent with the analysis of Shikako- Thomas et al. (2008) that participation in leisure activities for people with disabilities is linked with improvement of their living environment, both physical and social, because it reduces, or even eliminates, existing barriers and avoids, as much as possible, creating new ones. ...
Article
The issue of leisure for people with disabilities is central as the practice of these activities helps counteract certain problems of sedentariness, social isolation or stigmatization. This problematic is even more complicated in rural areas, where limited means, as well as geographical location and scope slow down certain avenues of leisure development for these challenged populations. The objective of this study was to seek to understand the realities experienced by partners of the Quebec Association for Leisure of People with Disabilities. Through focus groups and semi-directed interviews conducted with 70 local actors, this study highlights the fact that these challenged populations can enjoy a fair amount of leisure time, although it is increasingly difficult to maintain due, in particular, to precarious financial and human situations. The analyses also suggest that future challenges regarding this issue will be linked to partnerships, planning and programming considerations.
... When we take a closer look at leisure in rural areas for people with disabilities, we notice that the offer is often sparse, or even absent. Anderson and Heyne [12] as well as Dabrowski and Kuzmicki [6] note that the lack of knowledge, awareness and methods to include people with disabilities in recreational activities, along with geographical restrictions and issues with paratransit 2 [13], greatly contribute to creating barriers for their social integration. The authors add that in rural areas, most recreational programmes are segregated, whereas individuals with disabilities and their families most often want alternatives for inclusive leisure [12]. ...
... Although not all respondents made this observation, there seems to be a certain duality in the leisure offer between, on the one hand, an adapted (more or less varied) leisure offer consistently proposed to children and young teenagers with disabilities, and on the other hand, a fairly limited or even non-existent offer for young adults with disabilities. This is consistent with the views of Walker et al. [13] on the presence of this "service gap", but also those of Law et al. [21], who consider that different types of constraints, especially environmental constraints, increase with the age of people with disabilities. ...
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Leisure is an instrument used to facilitate the social integration of people with disabilities. However, it requires significant knowledge of the needs and expectations of this clientele, who often experience isolation, especially in rural areas. The general objective of this study was to attempt to identify and understand the realities experienced by the partners of the Quebec Association for Leisure for People with Disabilities, who offer various services and leisure activities to people with disabilities in rural Quebec. Through focus groups and semi-structured interviews with seventy local stakeholders, this study highlights the fact that the needs of organizations offering recreational activities to people with disabilities are increasingly urgent, especially in terms of finances, paratransit, accessibility, specialized human resources and consultation. This study also demonstrates that recreational activities are essential for the social and identity development of people with disabilities, but also for the development of more inclusive and connected rural communities.
... However, it is also possible that families in rural areas without adequate coverage feel powerless when making decisions related to their child's health because of limited options. This is also consistent with previous research on the perceptions of both parents of CSHCN and their service providers in rural areas (Alfonso, Walker, Gupta, Telfair, & Colquitt, 2015;Walker, Alfonso, Colquitt, Weeks, & Telfair, 2016). Better communication between these doctors/specialists and family members will lead to better health decisions for the child which may lead to more adequate insurance coverage overall. ...
... However, many families with a CSHCN fail to utilize available services due to additional barriers such as lack of transportation (Friedman & Rizzolo, 2016). This barrier is exacerbated in rural areas (Walker et al., 2016). Additionally, policies related to the 1915(c) waiver are determined by individual states. ...
Article
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Background: The purpose of this study was to examine urban vs. rural differences on the relationship between family contextual variables and adequacy of insurance coverage and impact on employment for among families with a child with Cerebral Palsy from a nationally representative sample. Methods: A retrospective, observational study was carried out using data from the National Survey of Children with Special Healthcare Needs. Results: A total of 744 participants reported as having a child with a diagnosis of Cerebral Palsy and were included in the sample. Logistic regression analyses, adjusting for urban and rural setting revealed different predictors of adequacy of insurance coverage and impact on employment. Among urban respondents, three variables with odds ratios ranging from 1.33 to 1.58 served as protective factors, increasing the likelihood of adequate insurance coverage. Four variables with odds ratios ranging from 1.41 to 1.79 decreased the likelihood of negatively impacting employment. Among rural families, there was only one significant protective factor for adequacy of insurance coverage (odds ratio 1.80) and one for decreasing the chances of impact on employment (odds ratio 2.53). Conclusion: Families in rural areas caring for a child with CP have few protective factors for adequate insurance coverage and impact on familial employment.
... 27 34 Assessment of the social determinants of health that impact each family's capacity to engage and care coordination roles are already embedded in the EI service to improve access and adherence to health care. [53][54][55][56][57][58] While these are the first steps to tailoring care and providing appropriate referrals, 59-61 children living in social disadvantage are more vulnerable to existing structural health system inequities 62 such as siloed care and poor transitions between health and disability services, and some children are still falling through the gaps. A combination of health system changes, consumer-informed care coordination 63 roles which work in partnership with families and build capacity to navigate complex service pathways, and programmes like ENVISAGE 45 which empower parents of children with neurodisability will contribute to improving engagement and outcomes. ...
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Objectives To report on knowledge translation strategies and outcomes from the implementation of the early detection guidelines for cerebral palsy (CP) in a state-wide tertiary early intervention (EI) service and investigate the impact of social determinants on clinical services. Design Retrospective longitudinal cohort study. Setting The Western Australia tertiary paediatric EI service. Participants EI clinicians, consumers and children using the EI service. Outcome measures Knowledge translation strategies including consumer perspectives, clinician training and Communities of Practice (CoP) guided implementation. We measured changes in referral number and age, delivery of early detection and intervention following the implementation of the guidelines. Exposure to adverse childhood experiences (ACEs), appointment non-attendance (DNA) rates, remoteness and socioeconomic quintiles were used to measure social determinants of health using negative binomial (Incidence Rate Ratios, IRR) and logistic regression (Odds Ratios, ORs). Results Ten consumers participated in Focus Groups, 100 clinicians were trained and 22 clinicians established a monthly CoP. Referrals increased fourfold to 511 children. Corrected gestational age at referral decreased from a median of 16.1 to 5.1 months (p<0.001) and at first appointment from 18.8 to 6.8 months (p<0.001). Children living in social disadvantage had the highest DNA risk (quintile 1 vs 5: IRR 2.2, 95% CI 1.1 to 4.6, p=0.037). Children exposed to ACEs had higher odds of living in social disadvantage (quintile 1 vs 5, OR=3.8, 95% CI 1.4 to 10.0, p=0.007). No significant association was found between remoteness and DNA rate or ACE score. Conclusions Implementation strategies reduced referral age and improved the delivery of early detection assessments. Further investigation of the association between social disadvantage, DNA risk and ACE score is required in the development of a state-wide early detection network.
... The stress and emotional fragility experienced by families due to having a disabled child can cause limitations not only in family relationships but also in social interactions (Küçük & Alemdar, 2018). Even in normal times, these families also experience difficulties such as health problems, access to services, stigmas, financial difficulties, and social isolation (Walker et al., 2016). ...
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Giriş: COVID-19 salgını döneminde, kaynakların sınırlanması ve erişimin güçleşmesi gibi nedenler özel gereksinimli bireyler ve ailelerini salgının oluşturduğu risklere daha açık hale getirmektedir. Özel gereksinimli bireyler ve ailelerinin salgın sürecindeki deneyimlerini, yaşadıkları zorlukları ve ihtiyaçlarını anlamak ve kriz etkilerini değerlendirmek sürece uyum sağlamaları için müdahaleler oluşturmada hayati önem taşımaktadır. Bu çalışmanın amacı özel gereksinimli çocuğa sahip ailelerde bakım yükünü üstlenen annelerin COVID-19 salgını sürecindeki deneyimlerini incelemektir.Yöntem: Çalışmada nitel araştırma yöntemlerinden fenomenolojik yöntem kullanılarak, özel gereksinimli çocukları olan annelerle (n = 14) yarı yapılandırılmış görüşmeler gerçekleştirilmiştir. Veri analizinde Miles ve Huberman modeli takip edilmiş ve sürekli karşılaştırma ve fenomenolojik indirgeme yöntemleri kullanılarak incelenen fenomeni yansıtan kod ve kategoriler ortaya çıkarılmıştır.Bulgular: Çalışmanın sonuçlarına göre, annelerin yaşamlarının zorlukları bu süreçte artmış, salgına dönük önlemler sonucu oluşan kısıtlanma algısı ve hizmetlere erişimin yetersizliği anneler arasında kaygıların yükselmesine neden olmuştur. Özel gereksinimli çocukların ve ailelerinin destek kaynaklarının kısıtlanması ve ihtiyaçlarını kendi kaynakları ile karşılamadaki yetersizlikleri, annelerin kendilerini yorgun ve tükenmiş hissetmelerine yol açmıştır. Yaşadıkları zorlukların yanı sıra anneler bu süreçte aile bireyleriyle verimli vakit geçirebildikleri, dijital kaynakları kullandıkları ve süreç sonunda kendilerini güçlü hissettikleri yönünde görüş bildirmişlerdir.Tartışma: Özel gereksinimli çocuğa sahip anneler arasında görülen kaygı, yetersizlik duygusu, yorgunluk, kısıtlanma gibi zorlayıcı deneyimler, bu annelerin COVID-19 salgınından olumsuz etkilenen kırılgan bireyler arasında yer aldıklarını göstermektedir. Salgın süreci zorlayıcı olsa da anneler zorluklarla başa çıkabilmede direnç kazanmış ve sürece uyum sağlamışlardır.Sonuç ve Öneriler: Gelecekteki olası salgınlar için özel gereksinimli üyesi olan ailelerin deneyimleri temel alınarak bu bireylere yönelik bilgilendirme, savunuculuk, psikososyal danışmanlık, güçlendirme odaklı çalışmalarla birlikte ailede kriz yönetimini kolaylaştıracak hizmetler sunulmalıdır.
... 91 In fact, parents of children with disabilities often experience extreme stress. 92 In the case of Sanfilippo disease, characterized by the deterioration of functioning, the fulfilment of social requirements of parental roles is even more difficult. Additionally, this could be complicated by other roles that they have to attend (like medical guardian, teacher, and others), and finally because of the lack of institutional support. ...
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Sanfilippo syndrome, or mucopolysaccharidosis type III (MPS III), is a disease grouping five genetic disorders, four of them occurring in humans and one known to date only in a mouse model. In every subtype of MPS III (designed A, B, C, D or E), a lack or drastically decreased activity of an enzyme involved in the degradation of heparan sulfate (HS) (a compound from the group of glycosaminoglycans (GAGs)) arises from a genetic defect. This leads to primary accumulation of HS, and secondary storage of other compounds, combined with changes in expressions of hundreds of genes and many defects in organelles and various biochemical processes in the cell. As a result, dysfunctions of tissues and organs occur, leading to severe symptoms in patients. Although changes in somatic organs are considerable, the central nervous system is especially severely affected, and neurological, cognitive and behavioral disorders are the most significant changes, making the disease enormously burdensome for patients and their families. In the light of the current lack of any registered therapy for Sanfilippo syndrome (despite various attempts of many research groups to develop effective treatment, still no specific drug or procedure is available for MPS III), optimizing care with a multidisciplinary approach is crucial for managing this disease and making quality of patients' life passable. This includes efforts to make/organize (i) accurate diagnosis as early as possible (which is not easy due to various possible misdiagnosis events caused by similarity of MPS III symptoms to those of other diseases and variability of patients), (ii) optimized symptomatic treatment (which is challenging because of complexity of symptoms and often untypical responses of MPS III patients to various drugs), and (iii) psychological care (for both patients and family members and/or caregivers). In this review article, we focus on these approaches, summarizing and discussing them.
... Selain itu transisi pada pendidikan juga menjadi stres utama bagi orangtua sang anak. Orangtua harus mencari sekolah yang menerima dan memiliki layanan khusus bagi anak yang mengalami disabilitas (Walker, Alfonso, Colquitt, Weeks, & Telfair, 2016). Hal ini juga ditambah oleh beban ekonomi yang harus ditanggung oleh keluarga yang memiliki anak disabilitas fisik. ...
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Golden Burden of Disease pada tahun 2004 menyatakan 15,3% atau 978 juta orang dari total 6,4 milyar penduduk di seluruh dunia mengalami disabilitas fisik, 93 juta di antaranya adalah anak-anak. Keterbatasan-keterbatasan anak dengan disabilitasmenjadi tantangan untuk berprestasi. Peran keluarga bagi anak disabilitas yang berprestasi menjadi menarik untuk dikaji. Tujuan penelitian ini adalah mengetahui pengalaman pengasuhan ibu yang memiliki anak disabilitas fisik berprestasi. Pemilihan partisipan menggunakan teknik purposive sampling, dengan kriteria ibu yang memiliki anak disabilitas fisik dalam kategori usia remaja dan sudah berhasil mendapatkan prestasi baik di bidang akademikatau non akademik. Subjek adalah tiga orang. Metode penelitian adalah Penelitian Fenomenologis Deskriptif (PFD), menggunakan metode pengumpulan data wawancara semi terstruktur dan model analisis Descriptive Phenomenological Analysis (DPA). Hasil penelitian mendapatkan lima sintesis tema mengenai pengalaman pengasuhan ibu dengan anak remaja disabilitas fisik berprestasi yaitu, (1) adanya upaya pengobatan yang telah dilakukan, (2) pentingnya mendapatkan bantuan dari lingkungan sosial, (3) upaya mendukung anak agar berprestasi, (4) berbagai upaya yang dilakukan saat mengasuh anak, dan (5) penerimaan atas kondisi anak, yang mana penerimaan atas kondisi anak ini menjadi faktor paling penting bagi ibu untuk bisa mengasuh dan mendorong anak agar dapat berprestasi.
... These needs may vary significantly not only across but also within disabilities (Gardiner et al., 2021). Furthermore, in addition to a range of other barriers to accessing care (Walker et al., 2016), the sheer volume of knowledge required to access the right services at the right time can feel overwhelming for families (Corcoran et al., 2015;Depape & Lindsay, 2015). This creates a need for family support in navigating meaningful resources. ...
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Background: Peer support for parents as a form of service and system navigation for families of children with neurodisabilities facilitates family resilience through their shared lived experience. However, there is little research available describing the experience of the key stakeholders engaged in this type of peer support. Methods: Through thematic analysis of qualitative interviews, the present case study examined the experience of three mothers of children with neurodisabilities engaged in a parent-to-parent peer support network. Results: Peers offer a unique form of support for navigating resources and experiences through shared lived experience. Our study revealed complex aspects of the emotional processes of peer support that have not previously been described. A unique finding was that the peers combined self-reflection and emotional expression in order to simultaneously provide empathy and bridge communication between a parent and service providers. Benefits associated with peer support included further development of knowledge and skills applicable to the peers’ own families; however, the emotional weight of the volunteer work was noted as a challenge for peer supporters. The network coordinator played a dual role, providing support to both the parent and peer. Our report on the structure and function of this peer support network contributes to a description of the current landscape of navigation support for families of children with disabilities. Conclusions: Findings suggest that peer support can play a complementary role to professional services in helping parents feel understood and access services that are meaningful to them. Peers can benefit from developing navigation skills; however, their role demands significant self-reflection and emotional investment. An additional layer of support for peers may contribute to the sustainability of peer support networks. Note: This article is supplemented by information about the Family Support Program of the Family Support Institute of British Columbia and a vignette based on the study findings that illustrates how the peer support network helped one mother to navigate resources and policies on behalf of her autistic teenaged daughter whose behaviour had become unmanageable.
... Some staff questioned caregivers' capacity to connect to resources outside of the clinic. Critically, this occludes the fact that families in need of resources may have little support, time, or social capital to identify and connect with these services independently [24,25]. Caregivers' "habit" of accessing support for basic needs through the SCD clinic speaks to a larger societal problem of systemic inequity and lack of a sufficient safety net that makes navigating services difficult-a process further exacerbated by managing a complex chronic illness. ...
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Background The purpose of this study was to assess pediatric hematology clinic staff’s perspectives regarding barriers and facilitators in addressing unmet basic needs for children with sickle cell disease (SCD). Methodology Six focus groups were held at four urban pediatric hematology clinics in the Northeastern region of the United States from November to December 2019. Discussion questions were developed to align with the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) implementation science framework, focusing on the domains of context and recipient and how clinics address adverse social determinants of health (SDoH) in their patient populations. A summative content analytical approach was taken to identify major themes in the data. Results We discerned the following themes: (1) families of children with SCD experience numerous unmet basic needs; (2) clinic staff believed they had a role to play in addressing these unmet basic needs; (3) staff felt their ability to address families’ unmet basic needs depended upon caregivers’ capacity to act on staff’s recommendations; and (4) clinic staff’s ability to address these needs was limited by organizational and systemic factors beyond their control. Conclusions These findings have important implications for how best to address adverse SDoH for this vulnerable pediatric population so that urban-based pediatric hematology clinics can more equitably support families.
... Moreover, more than half of the websites were regarded as insufficiently understandable and actionable according to the PEMAT evaluation. These findings suggest that some parents, especially those of children with a less common disability [33], do not find adequate information on the internet that may help them address all of the child's needs. ...
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Background The internet is a valuable resource for parents of typical children, who are looking for information about their children’s growth and development and how to boost them. However, for parents of children with special needs, especially for non–English-speaking parents, there are anecdotal reports stating that specific and accurate information is not available on the internet. Objective This study aims to describe the type of information available on the internet for French-speaking parents of children with disability as well as assess the quality of the information collected. Methods We carried out a search of the existing relevant websites targeted at parents of children with disability. We used a validated instrument to extract structural, textual, and visual characteristics of these websites and evaluate their usability. Results In all, 42 websites were analyzed; of these, the information had been validated by a trustworthy source in only 18 (43%) websites. Networking opportunities for parents were available in only 7 (17%) websites. Most websites provided information related to autism spectrum disorder (20/42, 42%) and learning disabilities (19/42, 45%), and only a few websites discussed other disability types such as behavorial disorders and developmental language disorders (4/42, 10% each). Community, social, and civic life (9/42, 22%); domestic life (12/42, 29%); and mobility (15/42, 36%) were the less frequently covered topics. With regard to the usability evaluation, 22 of the 42 (52%) websites received a global score <70%, whereas 20 (48%) scored ≥70% Conclusions Although the internet is an infinite source of information, it is not necessarily actionable for parents of children with disability. Some information remains difficult to find online, and networking opportunities with other parents dealing with similar challenges are scarce.
... Critically, this occludes the fact that families in need of resources may have little support, time, or social capital to identify and connect with these services independently. 22,23 Caregivers' "habit" of accessing support for basic needs through the SCD clinic speaks to a larger societal problem of systemic inequity and lack of a su cient safety net that makes navigating services di cult-a process further exacerbated by managing a complex chronic illness. Assumptions about caregivers' lack of self-su ciency are contradicted by research in an urban pediatric hematology clinic, which demonstrated that 45% of families provided with a community referral had communicated with the community agency within two weeks of receiving the referral. ...
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The purpose of this study was to assess pediatric hematology clinic staff’s perspectives regarding barriers and facilitators in addressing unmet basic needs for children with sickle cell disease (SCD). Six focus groups were held at four urban pediatric hematology clinics in New England from November to December 2019. Discussion questions were developed to align with the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) implementation science framework, focusing on the domains of context and recipient and how clinics address adverse social determinants of health (SDoH) in their patient populations. A summative content analytical approach was taken to identify major themes in the data. We discerned the following themes: (1) families of children with SCD experience numerous unmet basic needs; (2) clinic staff believed they had a role to play in addressing these unmet basic needs; (3) staff felt their ability to address families’ unmet basic needs depended upon caregivers’ capacity to act on staff’s recommendations; and (4) clinic staff’s ability to address these needs was limited by organizational and systemic factors beyond their control. These findings have important implications for how best to address adverse SDoH for this vulnerable pediatric population so that urban-based pediatric hematology clinics can more equitably support families.
... 12 Issues of isolation can be magnified in rural areas because of travel distances. 13 Even if scheduling challenges are overcome, simple outings such as a trip to the playground may be difficult due to layout and equipment not adapted to children who have special needs. 14 In addition to obvious reasons for family social isolation -such as inability to easily move technology or supplies, lack of alternative caregivers for the child (or respite), or in-home appointments and therapies -several less tangible factors, including anxiety or guilt about leaving the child at home while the rest of the family goes out, may contribute. ...
Article
In this issue introduction, the editor-in-chief of Journal of Patient-Centered Research and Reviews comments on the social isolation experienced by families that include children with significant disabilities.
... Rural areas possess unique challenges to physical activity, as environmental factors such as county sprawl serve as a barrier to positive health behaviors [28]. In rural areas, young people with disabilities and their families face disparities in the availability of and access to competent service providers [29,30]. ...
Article
Purpose: The purpose of this study was to use a qualitative, community-based participatory action research method – Photovoice – to identify perceived facilitators and barriers to physical activity among adolescents with cerebral palsy (CP) in a rural community. Materials and methods: Fifteen participants including adolescents with CP (n = 7) and parents (n = 8) were included in this study. The researchers followed the nine-step methodology recommended for Photovoice. During the training session, participants completed versions of the Barriers to Physical Activity Questionnaire for People with Mobility Impairments. This questionnaire was used to generate descriptive information about participant barriers and facilitators. Participants were given 14 days to take photographs after which researchers used in-depth and focus group interviews structured by the SHOWeD method. Content analysis of transcripts was used to identify common themes. Results and conclusions: Photographs and accompanying text were presented to local stakeholders and an action plan to increase physical activity for adolescents with CP was created. Perceived barriers included lack of inclusiveness, family isolation, and limited accessibility of equipment and resources. Facilitators included support services for families and adaptive sport leagues. Photovoice serves as a powerful tool to initiate change to promote physical activity among rural adolescents with CP. • Implications for rehabilitation • Adolescents with cerebral palsy living in rural areas face unique barriers to physical activity. • Accessibility of equipment and the structural environment can serve as barriers to participation. • Lack of accessibility can lead to feelings of isolation. • Families need support services outside of rehabilitation settings to support physical activity for their children and overcome potential barriers.
... 10 However, school-aged youth living with a disability have negative health outcomes regardless of context (urban versus rural) because availability of resources for this population is sparse. 11 For this reason, public health and school health practitioners in both rural and urban areas should seek to form partnerships with health care providers to develop comprehensive programs for students with disabilities with a focus on prevention. Public schools in 49 states and the District of Columbia receive Medicaid reimbursements for health related services for students receiving special education, 12 with schools required by IDEA to provide support services required for a free and appropriate, public education. ...
Article
BACKGROUND Youth living with disabilities are at risk of experiencing poor health outcomes. Coordinated school health programs have an opportunity to help youth with disabilities and their families through health education, health services, and community engagement. The World Health Organization developed the International Classification of Functioning, Disability, and Health (ICF) as a framework to analyze factors related to health conditions. We used the ICF to examine parental perceptions of health and function among students with disabilities living in rural and urban areas. METHODS We surveyed parents (N = 71) using the parent‐report versions of the Pediatric Outcomes Data Collection Instrument and Child Health and Illness Profile. From this group, parents were asked to volunteer to participate in in‐depth, individual interviews (N = 18). The interviews were audio‐recorded and transcribed verbatim. Researchers used the ICF linking rules to analyze and code the transcriptions. Emergent themes were assigned numerical ICF codes. RESULTS There were more similarities than differences among rural and urban families. Children living with disabilities face significant environmental barriers regardless of context. CONCLUSIONS Schools can facilitate education to improve the quality of life of parents and families of children with disabilities. School authorities should consider the many environmental barriers both urban and rural these families face in the community. The ICF can be used as a framework for program planning for community‐based, health education for this population.
... However, without strong empirical evidence and supporting frameworks, such an approach may provide significant challenges for families to navigate the health system to achieve appropriate coordinated and timely care for their child's needs. It is anticipated that factors such as lower education, health literacy, socioeconomic status and knowledge of treatment/service options may impact on the successful uptake of available services via the NDIS [33][34][35][36]. Lack of resilience and networking may also impact on negotiating beauacratic road blocks and mis-information about to access care. ...
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Background: Children with chronic health conditions have better health-related outcomes when their care is managed in a personalised and coordinated way. However, increased demand on Australian ambulatory care hospital services has led to longer waitlist times to access specialists and appropriate intervention services; placing vulnerable children at increased risk of poorer short-term (e.g. social difficulties) and long-term (e.g. convictions) health and social outcomes. Traditional approaches to increasing frequency and service of delivery are expensive and can have minimal impact on caregiver burden. A community based service-integration approach, rather than self-directed care is proposed as increased service linkages are more likely to occur and improve the health outcomes of children with a chronic health condition. Methods: An open, unblinded, multi-centre randomised controlled trial in two Australian public hospitals. 112 children (0-16 years) fulfilling the inclusion criteria will be randomised to one of two clinical pathways for management of their chronic health condition: (1) integrated children's care clinic (ICCC) or (2) self-directed care pathway. All children and caregivers will be interviewed at 1 week, and 3, 6 and 12 month time intervals. Primary outcome measures include the Pediatric Quality of Life (PedQOL) questionnaire, Subjective Units of Distress Scale, Child Behaviour Checklist (CBCL) and Rotter's Locus of Control Scale. Secondary outcome measures include the total number of medical appointments, school days missed and quantity of services accessed. Our main objectives are to determine if the ICCC results in better health and economics outcomes compared to the self-directed care pathway. Discussion: The success of a health systems approach needs to be balanced against clinical, mortality and cost-effectiveness data for long-term sustainability within a publicly funded health system. A clinical pathway that is sustainable, cost-effective, provides efficient evidence-based care and improves the quality of life outcomes for children with chronic health conditions has the potential to reduce waitlist times, improve access to health services, increase consumer satisfaction; and prevent costs associated with poorly managed chronic health conditions into adulthood. This study will be the first to provide clinical and health economics data on an integrated care pathway for the management of chronic health conditions in children. On a broader scale, results from this study will help guide care coordination frameworks for children with chronic health conditions; particularly with the introduction and implementation of a National Disability Insurance Scheme (NDIS) across Australia. Trial registration: Australia and New Zealand Clinical Trials Register (ANZCTR) ACTRN12617001188325 . Registered: 14th August, 2017.
... Many families often have difficulty finding a healthcare professional that is trained to provide care for a CSHCN within the provider options of their insurance (Miller et al., 2015). Although some families do have access to specialized medical care, some of these providers do not accept any form of insurance and are private pay only (Walker, Alfonso, Colquitt, Weeks, & Telfair, 2016). When families have difficulty accessing appropriate care for their child, they are often forced to attempt to provide care at home (Alfonso, Walker, Gupta, Telfair, & Colquit, 2015;Miller et al., 2015). ...
Article
In terms of protecting children with disabilities, healthcare rights are a crucial issue that cannot be ignored. In China, although the government provides generous health services, children with disabilities abandoning those services is a common phenomenon. Few scholars have directly and systematically studied this important issue. Using a qualitative method, we investigated the experiences and feelings of six service providers and twelve primary caregivers. From an ideological conflict perspective, we have found that China is a social context in which the state-led ideology of egalitarianism and the ideology of developmentalism co-exist but clash at the level of local governments and organizations. We produced two themes: (a) Governance methods arising from developmentalism produce invisible institutional exclusion in the form of non-client-centered tasks, constraints surrounding service costs, competitive welfare development models, and “good” performance chasing; (b) parents operating under developmentalism treat children with disabilities as abnormal, unprofitable, burdensome, and tragic, which encourages the voluntarily abandonment of healthcare services. The interaction of these two themes strengthens the ideological split occurring between them, leading to the widespread deprivation of health rights among children with disabilities. The results of this study call for critical reflections on disability policy implementation under this current conflicting ideology.
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People with disabilities, especially those living in low- and middle-income countries, experience significant challenges in accessing healthcare services and support. At times of disasters and emergencies, people with disabilities are further marginalised and excluded. During the coronavirus disease 2019 (COVID-19) pandemic, many people with disabilities are unable to access healthcare facilities, receive therapeutic interventions or rehabilitation, or gain access to medication. Of those who are able to access facilities, many experience challenges, and at times direct discrimination, accessing life-saving treatment such as intensive care unit admission and ventilator support. In addition, research has shown that people with disabilities are at higher risk of contracting the virus because of factors that include the need for interpersonal caregivers and living in residential facilities. We explore some of the challenges that people with disabilities residing in South Africa currently experience in relation to accessing healthcare facilities.
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Service-learning and interprofessional education are forms of experiential learning that instill confidence in students. This pilot study used a post-service learning survey to explore the benefits of interprofessional education in a service-learning experience with students. Findings indicated that this service-learning experience contributed to the development of cultural awareness, and professional skills, as well as increased team attitudes and perceptions related to the respective roles of occupational and physical therapy students. The following report describes students' perspectives and satisfaction concerning professional development, interprofessional education, and cultural awareness utilizing quantitative and qualitative descriptors.
Chapter
An estimated 61 million Americans have a disability, a number that is likely to continue rising as the population ages. People with disabilities are perhaps the largest underserved population in the United States, experiencing numerous inequities in opportunities for healthy living, health care, and health outcomes. Disability affects people of every race, culture, economic class, gender, age, and geographic location. However, some population groups experience higher prevalence of disability than others. Moreover, these same population groups tend to experience greater health inequities, which may be further compounded by the presence of disability. As the U.S. population becomes increasingly diverse, public health efforts must encompass the full range of that diversity, including the ways in which disability intersects with characteristics such as race and ethnicity, sexual orientation and gender identity, and rural residence.
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Parents play an essential role in the transition from separate physical activity programs to inclusive settings for their children. The purpose of this study was to explore experiences of parents as they anticipate and prepare for their children experiencing disability to transition, understand strategies used to address transition, and gain insights into the supports important to families during transition. Using an interpretative phenomenological analysis research approach, semistructured one-on-one interviews were conducted with 8 parents whose children were undergoing the transition from separate to inclusive community fitness contexts. Four themes described the experiences of parents as they anticipated, prepared for, and supported their child to transition: My child may be ready, but I am not; fear of outside judgment; playing by their rules; and reframing our thinking. Using Schlossberg's model, the tensions parents faced as they negotiated new roles, relationships, routines, and assumptions as they moved through the transition process were uncovered. The parents experienced transition alongside their children, providing insights for fitness and health-promotion professionals. Without preparation for transition, apprehensions and hesitancy may postpone or prevent their children's transition to community programs.
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Being compassionate to others can take its toll on practitioners working in emotionally exhausting professions such as recreational therapy (RT). Research that examines compassion satisfaction/compassion fatigue (CS/CF) in allied health settings is in abundance, but is noticeably absent in RT settings. This paper examines the levels of CS/CF in students working at a therapeutic camp for youth with multiple disabilities in the United States. The findings of the study revealed that: (1) the sample scored in the “high” range on the CS subscale; “average” on the burnout subscale; and “low” in the secondary stress trauma (STS) subscale; and (2) significant differences were found in CS/CF scores based on age and academic major. This research also reveals the importance of training in advance of therapeutic camp experiences towards the end of increasing CS, reducing burnout and STS. The practical implications for students and recreational therapists point to the need for training, awareness of the signs of CF, and the need for effective self-care as strategies. © 2016 Australia and New Zealand Association of Leisure Studies
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The efficacy of special education is often measured by employment, independent living and social outcomes. Therefore, the purpose of this review was to synthesize articles concerning outcomes of young adults who have transitioned from secondary school to adult life in rural areas. Articles on transition of young adults with disabilities in rural areas published in numerous refereed journals between 1990 and 1998 were reviewed to determine the rates of employment and independent living. Additional variables included demographics, job types, wages, and benefits. Results indicated that few empirical studies examined special education outcomes for young adults living in rural areas. Studies that did examine employment outcomes indicated that, overall, fewer than 70% of young adults with disabilities in the studies' samples were employed. However, employment outcomes seem to have improved from 1990 to 1997. The synthesis also indicated that, overall, fewer than 40% of young adults with disabilities in rural areas live independently. More research on additional outcomes of employment, independence, and social well-being is called for as well as research on effective transition programs and processes in rural areas.
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The No Child Left Behind Act (2001) and Individuals With Disabilities Education Act (IDEA, 2004) had implications for teachers and students at all levels (i.e., elementary, middle, high school). Specifically, IDEA had implications for secondary students with disabilities because it required students with disabilities exit high school prepared for postschool education, employment, and independent living. When considering federal mandates and reform initiatives, state and local education agencies have to consider how students with disabilities and secondary transition will be affected. The purpose of this article is to provide an overview of secondary transition evidence-based practices and predictors of postschool success for student with disabilities. Implications for policymakers related to improving secondary transition programs and practices at federal, state, and local levels are discussed.
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Disability is increasing among middle-aged adults, and, reversing earlier trends, increasing among older adults as well. Disability is experienced disproportionately by Black and lower socioeconomic status (SES) individuals. We used Medical Expenditure Panel Survey data to examine health care disparities in access to health care for middle-aged (31-64 years of age) and older (65+ years of age) adults with disabilities by race and ethnicity, education, and income (n=13,174). Using logistic regression, we examined three measures of potential (e.g., usual source of care), and three measures of realized (e.g., counseling related to smoking) access. Middle-aged and older minority individuals with disabilities had lower relative risks of having usual sources of care and higher relative risks of having suboptimal usual sources of care (e.g., a place rather than a person) than White adults with disabilities. There were SES effects observed for middle-aged adults with disabilities across most measures that were, for certain measures, more pronounced than SES effects among older adults with disabilities. These findings are important, since health resources (e.g., a usual source of care) may mediate relations among disability, morbidity, and mortality. Policy actions that may mitigate the disparities we observed include financial incentives to support access to an optimal usual source of care and mechanisms to foster behavioral interventions related to smoking and exercise. Ensuring that these actions address the specific concerns of individuals with disabilities, such as physical accessibility and provider cultural competency, is essential.
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Importance Although early detection and treatment of colorectal cancer has been shown to improve outcomes, geographic proximity may influence access to these services.Objective To examine the disparities that may exist in colorectal cancer screening and treatment by comparing the distribution of providers of these services in rural and urban counties in the United States.Design, Setting, and Participants A retrospective population-based study using data obtained from the 2009 Area Resource File for the entire US population within each county.Main Outcomes and Measures Counties in the United States were categorized as rural or urban using rural-urban continuum codes as our primary exposure. The proportion of gastroenterologists, general surgeons, and radiation oncologists per 100 000 people in each county was estimated as primary outcomes. Multivariate linear regression analysis adjusted for county-level socioeconomic variables, such as percentages of females, blacks, population without insurance, those with a high school diploma, and median household income, to estimate the relative density of each category of these providers between urban and rural counties.Results In total, 3220 counties were identified, comprising 1807 rural and 1413 urban counties. An unadjusted analysis showed an increased density of gastroenterologists, general surgeons, and radiation oncologists per 100 000 people in urban vs rural counties. A multivariable analysis revealed a significantly higher density of gastroenterologists (1.63; 95% CI, 1.40-1.85; P < .001), general surgeons (2.01; 95% CI, 1.28-2.73; P < .001), and radiation oncologists (0.68; 95% CI, 0.59-0.77; P < .001) per 100 000 people living in urban vs rural counties.Conclusions and Relevance A rural-urban disparity exists in the density of gastroenterologists, general surgeons, and radiation oncologists who traditionally provide colorectal cancer screening services and treatment. This might affect access to these services and may negatively influence outcomes for colorectal cancer in rural areas.
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Youth with autism spectrum disorders (ASD) experience poor outcomes in the areas of independence, employment, and postsecondary education. This article provides a critical review of the key aspects of the transition process and identifies recommendations for policy and practice. The review highlights the literature and explores recommendations across the manifold elements of this transition, including social and psychological development, high school curriculum, work, and college. Five policy recommendations are outlined in the areas of school curriculum, employment development, postsecondary education, inclusion with nondisabled peers, and systematic instruction. Finally, the authors offer recommendations for further research in the areas of social interaction, increased academic and vocational rigor, employment, technology, independence, and postsecondary education.
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Objectives: We examined disparities among US adults with disabilities and the degree to which health insurance attenuates disparities by race, ethnicity, and socioeconomic status (SES). Methods: We pooled data from the 2001-2007 Medical Expenditure Panel Survey on individuals with disabilities aged 18 to 64 years. We modeled measures of access and use as functions of predisposing, enabling, need, and contextual factors. We then included health insurance and examined the extent to which it reduced observed differences by race, ethnicity, and SES. Results: We found evidence of disparities in access and use among adults with disabilities. Adjusting for health insurance reduced these disparities most consistently for emergency department use. Uninsured individuals experienced substantially poorer access across most measures, including reporting a usual source of care and experiencing delays in or being unable to obtain care. Conclusions: Although health insurance is an important enabling resource among adults with disabilities, its effect on reducing differences by race, ethnicity, and SES on health care access and use was limited. Research exploring the effects of factors such as patient-provider interactions is warranted.
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On the basis of characteristics of family resilience, the study examined the perspectives of parents of children with an intellectual, physical, or learning disability. Thirty-two parents were interviewed as to past, present, and the modes of coping. The questions examined various aspects of family ecology domains: parents' responses to the child's diagnosis; patterns of adjustment; family support and services used by parents; and parents' feelings and future expectations. Although, it was found that most parents had to make changes in their social life and expressed high levels of frustration and dissatisfaction, many try to maintain their routine life. The majority expressed the need for a strong belief in the child and in the child's future, an optimistic outlook, and a realistic view and acceptance of the disability. The study highlighted the importance of social resources and support, and the need for effective programs of intervention.
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D. Wayne Osgood, E. Michael Foster, and Mark E. Courtney examine the transition to adulthood for youth involved in social service and justice systems during childhood and adolescence. They survey the challenges faced by youth in the mental health system, the foster care system, the juvenile justice system, the criminal justice system, and special education, and by youth with physical disabilities and chronic illness, as well as runaway and homeless youth. One problem is that the services these vulnerable populations receive from these systems as children and adolescents often end abruptly as they transition to adulthood, even though the need for them continues. Youth must leave systems tailored for clients their age and, if they are eligible for further services at all, enter adult systems that are not equipped to address their needs. One exception is the special education system, whose services extend into early adulthood and are designed for individuals' needs. The authors review current public policies directed toward vulnerable youth in transition and find problems in four areas: eligibility criteria that exclude youth from services that might benefit them, inadequate funding for transition services, a lack of coordination across service systems, and inadequate training about young-adult developmental issues for service professionals. The authors then discuss policy options that can help create a developmentally appropriate and socially inclusive system of support for vulnerable youth. Among the options are strengthening all programs for youth in transition, improving the existing systems of care for children and adolescents, addressing the loss of access to services at the age of majority, and coordinating today's multiple systems into a single coherent system. The authors see heightened governmental interest in better supports for vulnerable young adults, both through expanding the federal role in their lives and through improving coordination of the systems that serve them. The Fostering Connections Act of 2008, for example, extended services to adolescents in foster care from the age of eighteen to the age of twenty-one.
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ABSTRACT: Family support services and numbers of families supported by state. Data collected by the State of the States in Intellectual and Developmental Disabilities Project. (website stateofthestates.org).
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This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care providers? What are promising practices that facilitate successful HCT? What are obstacles that inhibit HCT? A qualitative approach was used to investigate these questions. Focus group interviews were conducted. Content and narrative analyses of interview transcripts were completed using ATLAS.ti. Thirty-four focus groups and interviews were conducted with 143 young adults with disabilities and special health care needs, family members, and health care providers. Content analysis yielded 3 content domains: transition services, which presents a chronological understanding of the transition process; health care systems, which presents differences between pediatric and adult-oriented medicine and how these differences inhibit transition; and transition narratives, which discusses transition experience in the broader context of relationships between patients and health care providers. This study demonstrated the presence of important reciprocal relationships that are based on mutual trust between providers and families and are developed as part of the care of chronically ill children. Evidence supports the need for appropriate termination of pediatric relationships as part of the transition process. Evidence further supports the idea that pediatric and adult-oriented medicines represent 2 different medical subcultures. Young adults' and family members' lack of preparation for successful participation in the adult health care system contributes to problems with HCT.
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To learn about the health care experiences of rural residents with disabilities. Rural areas in Massachusetts and Virginia. Local centers for independent living recruited 35 adults with sensory, physical, or psychiatric disabilities to participate in four focus group interviews. Verbatim transcripts of interviews were reviewed to identify major themes. Interviewees described the many well-recognized impediments to health care in rural America; disability appears to exacerbate these barriers. Interviewees reported substantial difficulties finding physicians who understand their disabilities and sometimes feel that they must teach their local doctors about their underlying conditions. Interviewees described needing to travel periodically to large medical centers to get necessary specialty care. Many are poor and are either uninsured or have Medicaid coverage, complicating their searches for willing primary care physicians. Because many cannot drive, they face great difficulties getting to their local doctor and especially making long trips to urban centers. Available public transportation often is inaccessible and unreliable. Physicians' offices are sometimes located in old buildings that do not have accessible entrances or equipment. Based on their personal experiences, interviewees perceive that rural areas are generally less sensitive to disability access issues than urban areas. Meeting the health care needs of rural residents with disabilities will require interventions beyond health care, involving transportation and access issues more broadly.
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The unique context of the rural setting provides special challenges to furnishing ethical healthcare to its approximately 62 million inhabitants. Although rural communities are widely diverse, most have the following common features: limited economic resources, shared values, reduced health status, limited availability of and accessibility to healthcare services, overlapping professional-patient relationships and care giver stress. These rural features shape common healthcare ethical issues, including threats to confidentiality, boundary issues, professional-patient relationship and allocation of resources. To date, there exists a limited focus on rural healthcare ethics shown by the scarcity of rural healthcare ethics literature, rural ethics committees, rural focused ethics training and research on rural ethics issues. An interdisciplinary group of rural healthcare ethicists with backgrounds in medicine, nursing and philosophy was convened to explore the need for a rural healthcare ethics agenda. At the meeting, the Coalition for Rural Health Care Ethics agreed to a definition of rural healthcare ethics and a broad-ranging rural ethics agenda with the ultimate goal of enhancing the quality of patient care in rural America. The proposed agenda calls for increasing awareness and understanding of rural healthcare ethics through the development of evidence--informed, rural-attuned research, scholarship and education in collaboration with rural healthcare professionals, healthcare institutions and the diverse rural population.
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Transition to adult life and adult service settings is challenging for any student with severe intellectual and multiple disabilities, but more so if she or he lives in a rural area. This article discusses the barriers to effective transition in rural communities using Oklahoma as an example and describes a community survey procedure used to identify opportunities for youth in rural communities in this state.
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Young people develop self-identity by trying roles and experiences, setting goals and peer comparison. With support and participatory experiences, they can develop strong self-concepts, resilience and goal-oriented behaviours. These developments underpin self-care. Young people’s health care needs should be understood within this context. However, the experience of young people with disabilities, who are major health care users, is understudied and relies on indirect report. The primary aims of this study were, first, to begin to understand some factors of significance to young people with disabilities, in development from childhood to adulthood and, second, within this context, explore their health care requirements at this age. A secondary aim was to learn more about the process of enabling young people with complex needs to participate in qualitative research. Participants were recruited from a school for people with disabilities and a life-skills course at a higher education college. They participated in a focus group (N=29) or interview (N=5). Some required additional communication support. Robust qualitative methods were used to thematically analyse the data. The findings suggest how positive experiences in one area of life can support participation in other domains. We conclude that achieving closer inter-agency working is essential and requires not just good communication between systems (such as health, school and home), but a shared understanding and vision of how to promote the personal development of young people.
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The New York State Education Department awarded sixty Model Transition Program (MTP) grants in 2007 to school districts throughout New York State. The objectives of the MTP were to (1) strengthen partnerships between the New York State Vocational Rehabilitation (VR) system and high schools, (2) increase participation of youth in employment, VR-related services, and post-secondary education, and (3) develop partnerships between the schools and community service partners, including postsecondary education and businesses. Preliminary findings indicate that students who had greater involvement In career development activities, measureable postsecondary goals in their Individualized Education Programs, and received services from community partners were more likely to engage in work-related experiences and the state-federal VR program.
Article
In this study, a family support program was carried out for primary caregivers of children with disabilities. The program included respite care, recreation programs, counseling, and social support coordination based on individual needs of each family. In order to verify the intervention effects, parenting stress and family quality of life were measured before and after the intervention. Twenty-one primary caregivers who have children with disabilities attending a special school located in Buchon, Korea participated in the study. The experimental group A (sevencaregivers) was provided with respite care services only whereas the experimental group B (seven caregivers) was provided with a multifaceted family support program including recreational programs, counseling, and social support coordination in addition to respite care services. No support was provided to the control group (seven caregivers). The results showed a significant difference in the change of family quality of life between the experimental group B and the control group. However, there was no significant difference among three groups in parenting stress. Discussion about the results and implications for future research is presented.
Article
High school redesign (HSR) efforts currently focus on helping schools prepare all students to be college and career ready. As these initiatives are provided within the context of high schools, students with Individualized Education Programs are impacted by any effort to reform high schools. As a result, policies designed to improve the college and a career readiness (CCR) of all students should simultaneously improve the CCR of students with disabilities. The purpose of this article is to briefly describe current broad initiatives in high school reform and discuss implications for federal, state, and local policy to enable students with disabilities to fully participate in high school reforms designed to ensure that all students graduate college and are career ready.
Objectives This report details the National Center for Health Statistics' (NCHS) development of the 2006 NCHS Urban-Rural Classification Scheme for Counties and provides some examples of how the scheme can be used to describe differences in health measures by urbanization level. Methods The 2006 NCHS urban-rural classification scheme classifies all U.S. counties and county-equivalents into six levels-four for metropolitan counties and two for nonmetropolitan counties. The Office of Management and Budget's delineation of metropolitan and nonmetropolitan counties forms the foundation of the scheme. The NCHS scheme also uses the cut points of the U.S. Department of Agriculture Rural-Urban Continuum Codes to subdivide the metropolitan counties based on the population of their metropolitan statistical area (MSA): large, for MSA population of 1 million or more; medium, for MSA population of 250,000-999,999; and small, for MSA population below 250,000. Large metro counties were further separated into large central and large fringe metro categories using classification rules developed by NCHS. Nonmetropolitan counties were assigned to two levels based on the Office of Management and Budget's designated micropolitan or noncore status. The 2006 scheme was applied to data from the National Vital Statistics System (NVSS) and the National Health Interview Survey (NHIS) to illustrate its ability to capture health differences by urbanization level. Results and Conclusions Application of the 2006 NCHS scheme to NVSS and NHIS data shows that it identifies important health disparities among communities, most notably those for inner city and suburban communities. The design of the NCHS Urban-Rural Classification Scheme for Counties makes it particularly well-suited for assessing and monitoring health differences across the full urbanization continuum.
Article
There is limited research on rural-urban disparities in U.S. life expectancy. This study examined trends in rural-urban disparities in life expectancy at birth in the U.S. between 1969 and 2009. The 1969-2009 U.S. county-level mortality data linked to a rural-urban continuum measure were analyzed. Life expectancies were calculated by age, gender, and race for 3-year time periods between 1969 and 2004 and for 2005-2009 using standard life-table methodology. Differences in life expectancy were decomposed by age and cause of death. Life expectancy was inversely related to levels of rurality. In 2005-2009, those in large metropolitan areas had a life expectancy of 79.1 years, compared with 76.9 years in small urban towns and 76.7 years in rural areas. When stratified by gender, race, and income, life expectancy ranged from 67.7 years among poor black men in nonmetropolitan areas to 89.6 among poor Asian/Pacific Islander women in metropolitan areas. Rural-urban disparities widened over time. In 1969-1971, life expectancy was 0.4 years longer in metropolitan than in nonmetropolitan areas (70.9 vs 70.5 years). By 2005-2009, the life expectancy difference had increased to 2.0 years (78.8 vs 76.8 years). The rural poor and rural blacks currently experience survival probabilities that urban rich and urban whites enjoyed 4 decades earlier. Causes of death contributing most to the increasing rural-urban disparity and lower life expectancy in rural areas include heart disease, unintentional injuries, COPD, lung cancer, stroke, suicide, and diabetes. Between 1969 and 2009, residents in metropolitan areas experienced larger gains in life expectancy than those in nonmetropolitan areas, contributing to the widening gap.
Article
Many youths with disabilities, especially those receiving or potentially eligible for Social Security benefits, need assistance as they transition into adulthood. Upon completing secondary school, they face an abrupt end to provider-initiated public entitlement services. They often lack the knowledge and support to access and link fragmented adult support services. This article presents an overview of two projects in the Social Security Administration's Youth Transition Demonstration: California's Bridges to Youth Self-Sufficiency and Mississippi's Model Youth Transition Innovation. We report key outcomes and highlight the experience of one youth in each project who successfully completed the program.
Article
The aim of this study was to test whether the effect of the pile-up of demands associated with a disability on quality of life, was mediated by resilience, quantity and quality of social support for adolescents with a disability and their parents. One hundred and thirty two parents, 90 mothers and 42 fathers and 111 adolescents, aged between 16 and 24 years completed measures of the pile-up of demands, social support, resilience and quality of life. Structural equation modeling with the bootstrap resampling method showed that the impact of the disability of their son/daughter on the quality of life of the parents was fully mediated through the parents’ resilience and the quantity of social support and that resilience, however only partly, mediates the effect of adaptive skills on the quality of life of the adolescents with a disability. Limitations of the study and clinical implications are discussed.
Article
Background: Although rural residents are more likely to be diagnosed with more advanced cancers and to die of cancer, little is known about rural-urban disparities in self-reported health among survivors. Methods: The authors identified adults who had a self-reported history of cancer from the National Health Interview Survey (2006-2010). Rural-urban residence was defined using US Census definitions. Logistic regression with weighting to account for complex sampling was used to assess rural-urban differences in health status after accounting for differences in demographic characteristics. Results: Of the 7804 identified cancer survivors, 20.8% were rural residents. This translated to a population of 2.8 million rural cancer survivors in the United States. Rural survivors were more likely than urban survivors to be non-Hispanic white (P < .001), to have less education (P < .001), and to lack health insurance (P < .001). Rural survivors reported worse health in all domains. After adjustment for sex, race/ethnicity, age, marital status, education, insurance, time since diagnosis, and number of cancers, rural survivors were more likely to report fair/poor health (odds ratio, 1.39; 95% confidence interval, 1.20-1.62), psychological distress (odds ratio, 1.23; 95% confidence interval, 1.00-1.50), ≥2 noncancer comorbidities (odds ratio, 1.15; 95% confidence interval, 1.01-1.32), and health-related unemployment (odds ratio, 1.66; 95% confidence interval, 1.35-2.03). Conclusions: The current results provide the first estimates of the proportion and number of US adult cancer survivors who reside in rural areas. Rural cancer survivors are at greater risk for a variety of poor health outcomes, even many years after their cancer diagnosis, and should be a target for interventions to improve their health and well being.
Article
The aim of this study was to explore parents' experiences and strategies used when meeting the needs of all their children, including an adolescent with disabilities. A qualitative study design was employed. The study was conducted in two phases. (i) Secondary analysis of ecocultural interviews with 12 parent-carers of more than one child, including an adolescent (10-21 years) with intellectual disabilities. (ii) In-depth, semi-structured interviews with a sub-sample (n = 4) of parent-carers. Data was analysed using Strauss & Corbin's (1998) constant comparative method. Parents balanced their children's needs through a combination of strategies driven by their goals, beliefs and values. Parents found this very challenging. They were always conscious of the needs of all of their children, although they could not necessarily meet all their children's needs equally. Strategies that attended to all children simultaneously were preferred by most parents, but could not always be used. Parents, at times, used strategies that prioritized the needs of the adolescent with disabilities or siblings. Findings add to knowledge on what families of adolescents with disabilities do day to day and specifically reveal how these parents meet the needs of their children. Practitioners, together with disability and mainstream services and systems, need to recognize parents' goals, beliefs and values and the needs of the adolescent with disabilities. This will effectively aid the adolescent with disabilities, their siblings, parents and the whole of family life.
Article
Transition to post-statutory education and employment for young people with learning disabilities has become a hotly debated issue among professionals in education and support services in the UK. Partnerships between educational institutions and voluntary sector providers are supposed to be ideal vehicles for delivering transition services and securing outcomes for young people with learning disabilities. In this article, Axel Kaehne and Stephen Bayer of the Welsh Centre for Learning Difficulties report the findings of a survey of the views of special educational needs co-ordinators and professionals who are involved at operational and strategic levels in the work of transition partnerships. The data show that undue emphasis is often placed, by all stakeholders, on the soft, rather than the concrete, outcomes of transition; that smooth transitions are still hampered by insufficient flow of information between collaborating agencies; and that there are still significant gaps in provision, in particular in the supported employment field, due to funding or referral restrictions. To deliver first-class transitions, argue Axel Kaehne and Stephen Bayer, partnerships that support young people with learning disabilities need to address these difficulties with some urgency.
Article
Five patterns of service provider-caregiver-adolescent interaction are discussed using qualitative interviews and file review data from 44 youth with complex needs who were clients of more than one psychosocial service (child welfare, mental health, addictions, juvenile justice, and special education). Findings show that young people and their families become triangulated with service providers, either engaging with, or resisting, interventions. For young people with complex needs involved with multiple service providers, both positive and negative patterns of interaction contribute to the complexity of caregiver-child interactions. According to young people themselves, the most functional of these patterns, empowerment, was experienced as protective when it helped them to meet their personal needs and enhance communication. In contrast, four problematic patterns produced triangulations described as conflictual or unsupportive. The implications of these patterns for family therapy are discussed with an emphasis on the therapist as both clinician and advocate for better services from multiple providers.
Article
Children with special health care needs (CSHCN) are at risk for decreased participation in educational and social activities, which can negatively impact their lives. The objectives of this study were to document the presence of participation restrictions for CSHCN compared with other children and to determine how personal and environmental factors are associated with participation restrictions for CSHCN. The 2007 National Survey of Children's Health was analyzed to evaluate 2 participation outcomes for children aged 6 to 17 years, ie, school attendance and participation in organized activities, and 2 participation outcomes for children aged 12 to 17 years, ie, working for pay and volunteering. Adjusted prevalences of participation restrictions were calculated for children with and without special health care needs. Logistic regression was used to identify factors independently associated with participation restrictions for CSHCN. After adjustment for sociodemographic characteristics, a greater proportion of CSHCN (27.9%) reported missing more than 5 days of school than other children (15.1%). In contrast, no differences were found for participation in organized activities, working for pay, or volunteering. CSHCN with functional limitations were more likely to experience all 4 types of participation restrictions compared with other CSHCN and non-CSHCN. For CSHCN, the odds of certain participation restrictions were greater for those with functional limitations, in fair/poor health, with depressed mood, living at or near the federal poverty level, and living in homes not headed by two parents. CSHCN with functional limitations and those with worse health status are at elevated risk of experiencing participation restrictions than other children. Social disadvantage furthers the likelihood that CSHCN will experience participation restrictions.
Article
To understand the contribution of educational, employment, transportation, and assured income service programs to the successful transition to adulthood of young persons with motor disabilities. Personal interviews of 76 young adults ages 20 to 30 years with a diagnosis of cerebral palsy (n = 54) or spina bifida (n = 22) varying in functional mobility. Content analysis of transcribed interviews was conducted and themes identified. Results. 'Paradox of Services' emerged as a dominant theme across all four service sectors. Services designed to encourage independence and full participation for the young adults in their communities often restricted their independence and employment options in young adulthood. Services need to be more individualized and flexible to accommodate the environmental and personal needs of the young adults. Rehabilitation professionals have important roles at both an individual family level and the systems level to ensure the 'best fit' between persons with motor disabilities and the services available to them. Contemporary views of disability support rehabilitation intervention targeting both individual and environmental factors.
Article
Care and service trajectories for people with intellectual disabilities (i.e. people with mental retardations) are routes within the healthcare delivery system that consist of all the steps that people with intellectual disabilities and their families have to take in order to realise the needed care and services. This article aims to identify the quality aspects of trajectories that are considered important by people with intellectual disabilities and their parents/relatives. In addition, it examines how these aspects are related to quality determinants mentioned in the literature on integrated care and to authoritative models for quality assessment of care and service delivery. Quality aspects were collected during eight focus group discussions with people with intellectual disabilities or their parents/relatives. In addition, quality determinants of integrated care and authoritative models for quality assessment were selected by means of a thorough review of the literature. Finally, the quality aspects identified using focus groups were compared to the determinants and models found in the literature. The quality aspects presented by people with intellectual disabilities referred particularly to the immediate situation in receiving care and services, such as 'keeping appointments' and 'time and attention', whereas parents/relatives also referred to broader 'organisational issues', such as 'access to support' and 'problems with placement'. The quality aspects, however, are minimally related to the quality determinants of integrated care, probably because clients and their parents/relatives find it difficult to have an overview of the coherence between the various actions that have to be performed, when going through the trajectories. In contrast, the quality aspects seem to fit into the domains of the authoritative models for quality assessment, probably because of the minimal focus of the models on long-term aspects in care and service delivery.
Article
Although it is expected that caring for a child with cerebral palsy (CP) can impact on the quality of life (QOL) of caregivers, the QOL of carers' has yet to be adequately examined. The aims of this study are to: (1) explore the QOL of mothers and fathers of children with CP aged 3-18 years; and (2) examine whether the impact of caring for a child with CP changes from childhood to adolescence. A qualitative study was conducted utilizing a grounded theory framework. Twenty-four mothers and 13 fathers of children and adolescents with CP aged 3-7 years (n = 15), 8-12 years (n = 10) and 13-18 years (n = 12) and with varying levels of impairment (GMFCS Level I = 1, II = 4, II = 3, IV = 5, V = 12) participated in semi-structured interviews about their QOL. The transcripts were analysed to identify issues affecting parental QOL. There were no differences in parental QOL among subgroups (i.e. mothers and fathers, age groups, GMFCS levels). Parental QOL ranged across a wide spectrum. Caring for a child with CP affects a parent's physical well-being, social well-being, freedom and independence, family well-being and financial stability. Parents indicated that they often feel unsupported by the services they access. Caring for a child with CP can both positively and negatively impact on a parent's life. There is value for both parents and children if parental concerns and determinants of QOL are considered in overall programme planning and service delivery for children and their families.
Article
Partnering between families and their children's providers is a cornerstone of family-centered care. This study aimed to identify factors associated with family-provider partnership and determine the association between partnership and other outcome measures for children with special health care needs (CSHCN). Descriptive, bivariate, and multivariate analyses were conducted using data from the 2005-2006 National Survey of Children with Special Health Care Needs. Multivariate models showed that CSHCN who are White non-Hispanic, younger than 12, reside in households with incomes above 400% of the federal poverty level, and have a usual source of care were associated with family-provider partnership. Multivariate models showed that family-provider partnership was significantly associated with adequate insurance, early and continual screening, organized health care services, and transition preparedness. Family-provider partnership was associated with 20% fewer emergency department visits and 9% fewer school days missed. This study suggests that policies aimed at promoting family-provider partnership could increase health outcomes for CSHCN.
Article
This research quantifies the extent to which excess morbidity in rural areas is associated with individual characteristics, county income, and neighborhood poverty. Census geographic codes were assigned to people 25 to 64 years old (n = 176,930) from the National Health Interview Survey, 1989 to 1991, in order to link individuals to the U.S. Department of Agriculture's county urban-rural classification scheme and to 1990 county per capita income and poverty concentration in Census tracts. General health status and limitation of activity were analyzed in logistic and multinomial logit models. Residents of rural counties were at greater risk for health problems compared to residents of metropolitan and central core counties. In adjusted models, the health disadvantage of rural areas was partly explained by differences in population composition. The residual rural disadvantage was concentrated in people with less than a high school education. Tract poverty and county per capita income were also important independent predictors of morbidity. The results of this study suggest that special attention should be paid to improving education in disadvantaged places and to better understanding the ways in which economic growth and its benefits are distributed.
Article
To evaluate the role of health care providers in the transition from pediatric to adult health care for adolescents with disabilities and special health care needs (SHCN) from both the families' and providers' perspectives. A total of 753 parents of adolescents with SHCN (e.g. developmental, physical, behavioral/emotional, learning, or health-related disabilities) were surveyed by questionnaire to assess their perceptions of their health care provider's level of involvement in various transition activities and the extent to which they felt it was the provider's responsibility to assist in a particular activity. One hundred forty-one health care providers (primarily pediatricians) completed a parallel survey to assess their level of participation in the same transition activities and the extent to which they felt it was their responsibility to assist with each transition activity. The questionnaire listed 13 different transition activities health providers may engage in to help young people prepare for adulthood and also asked questions about areas such as employment and health insurance. To investigate whether parents and providers share the same views regarding the involvement and responsibility of providers across the 13 transition activities, two sets of Student's t-tests were calculated. There were significant differences between providers and parents concerning both the level of provider involvement and the extent to which it was the provider's responsibility to assist in various transition activities (e.g., health providers reported significantly more involvement than did parents for 11 of the 13 transition activities and, compared with parents, providers reported that it was more within their role to assist in these 11 transition activities). The findings suggest a need for health care providers and parents to have open discussions about the nature and extent to which providers assist families in key transition activities.
Article
A key issue, and one known to be highly problematic and challenging, concerns the transition of young disabled people from children's services to adult services, and from childhood to adulthood. To inform its recommendations on this issue, the Disabled Children's External Working Group (EWG) for the Children's NSF commissioned a review of research on young disabled people and transition. Given the preponderance of grey literature in this area, database searches were supplemented by hand searching of key journals and contacts with key individuals, research units, publishers and funding bodies in order to identify relevant literature on the experiences of transition from the perspectives of young people, parents and practitioners; the outcomes of transition; and evaluations of services provided during this life-stage. The evidence available with regard to transitions of young disabled people provides a clear and consistent picture of the way transitions are currently experienced by young disabled people and their families. There is limited evidence on what works to ensure smooth transitions between services and positive outcomes of transition for the young people themselves. Existing research is very persuasive on the need to improve transitions for young disabled people. It can also be used to provide clues as to the sorts of support and service configurations that need to be in place to ensure positive transitions. However, further research is needed both at the level of specific service/service model evaluation as well as holistic, longitudinal work to provide evidence on the long-term outcomes of young disabled people as they move into adulthood.
American Community Survey
United States Census Bureau (2013) American Community Survey. http://factfinder2.census.gov/faces/tableservices/jsf/pages/productview.xhtml?fpt=table
Factors That Affect Parent Perceptions of Provider-Family Part
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Knapp, C.A., Madden, V.L. and Marcu, M.I. (2010) Factors That Affect Parent Perceptions of Provider-Family Part
The National Survey of Children with Special Health Care Needs: Chartbook
Health Resources and Services Administration. (2008) The National Survey of Children with Special Health Care Needs: Chartbook 2005-2006. http://mchb.hrsa.gov/cshcn05