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Financial Issues Associated with Having a Child with Autism
Abstract
Data from the Family Experiences with Autism Survey are used to identify factors associated with financial problems in families that have a child with autism. Likelihood of financial problems was positively associated with use of medical interventions, having unreimbursed medical or therapy expenses, and having relatively lower income. Use of speech and language therapy was negatively associated with likelihood of financial problems. Many survey respondents forfeited future financial security and even experienced bankruptcy to provide needed therapy for a child with autism. Specific ways that financial advisors can help families that have a child with autism are outlined. Copyright Springer Science+Business Media, LLC 2007
... The US Consumer Financial Protection Bureau (CFPB) defines financial well-being as a four-part construct, including day-to-day finance management, financial freedom to make choices, capability to absorb shocks, and being on track for long-term goals (CFPB, 2015a). Family financial well-being is likely to have important impacts on the development of children with autism spectrum disorder (ASD; Parish et al., 2015;Sharpe & Baker, 2007). For example, parents of children with ASD are required to have financial capability to balance resources for different and even competing needs of children and families (Sharpe & Baker, 2007). ...
... Family financial well-being is likely to have important impacts on the development of children with autism spectrum disorder (ASD; Parish et al., 2015;Sharpe & Baker, 2007). For example, parents of children with ASD are required to have financial capability to balance resources for different and even competing needs of children and families (Sharpe & Baker, 2007). Family financial well-being may also affect child health and reflect parents' long-term financial arrangement for children (e.g., special needs trusts; Allmark & Machaczek, 2015). ...
... Despite increased public support to children with ASD (Sun et al., 2013), the affordable services are limited and financial burden is an emergent problem in China (McCabe, 2013). Previous research (Parish et al., 2015;Sharpe & Baker, 2007) suggests that ASD usually associate with substantial lifetime costs to families, and health costs are highly related to autism families' financial security. The literature suggests that caring for a child with ASD may be associated with family financial well-being for a large population in China. ...
Little is known on the financial well-being of families raising children with autism spectrum disorders (ASD). Family financial well-being has important impacts on the development of children with ASD. The study uses a 2019 survey collected from Chinese families raising a child with ASD (N = 3064) to examine their financial well-being and its association with health expenditures for children. Extensive control variables (i.e., demographic and socioeconomic characteristics of children, respondents, and their families) are adjusted in analyses. Findings suggest that the amount of health expenditures is negatively associated with respondents’ perception of their financial status. The significance of health expenditures disappears after household material hardship is adjusted. Health expenditures affect financial well-being mainly through resource competitions against family needs.
... À ces contraintes sur le plan des soins quotidiens viennent s'ajouter d'autres, qui sont d'ordre économique. Recevoir le diagnostic d'autisme est, selon certains témoignages de parents, le commencement d'un périple qui impose des contraintes profondes sur les ressources financières de la famille et provoque d'importantes préoccupations, et ce, durant toute la vie de l'enfant (Jarbrink, 2007 ;Matthews et al., 2011 ;Sharpe et Baker, 2007). Les stratégies d'intervention et les soins peuvent en effet s'avérer onéreux dans certains pays. ...
... Les stratégies d'intervention et les soins peuvent en effet s'avérer onéreux dans certains pays. Ainsi, Sharpe et Baker (2007) en interrogeant via un sondage un grand nombre de parents aux États-Unis rapportent que la majorité d'entre eux témoignent avoir été douloureusement surpris relativement aux coûts engendrés par l'arrivée de leur enfant présentant un TSA. Les dépenses annuelles associées à ces services peuvent de fait se compter en milliers de dollars (Altiere et Von Kluge, 2009b). ...
... En Suède, divers services ne sont en effet que partiellement couverts par les assurances publiques ou privées, notamment les séances qui se déroulent en privé, comme les séances d'intégration sensorielle, les séances de modifications alimentaires ou encore de thérapie musicale (Jarbrink, 2007 ;Jarbrink et al., 2003). Aux États-Unis d'autre part, certains services ne sont tout simplement pas remboursables, tels les soins médicaux, les thérapies, la médication et les interventions médicales (Sharpe et Baker, 2007). Aussi, selon cette étude américaine, plusieurs parents doivent prendre plus de crédit, liquider leurs éco nomies ou encore modifier leur hypothèque pour être en mesure de payer les séances de thérapie ou les soins de leur enfant ayant un TSA. ...
Être parent constitue une expérience d’enrichissement et de plaisirs ; cela s’accompagne aussi des défis importants qui peuvent mettre à mal les ressources personnelles et familiales. Cela requiert également un soutien extérieur et divers types d’appuis professionnels. Si de telles préoccupations s’avèrent valables pour les familles en général, elles prennent encore plus d’impor- tance lorsqu’il s’agit de familles dont un membre vit avec un trouble du spectre de l’autisme (TSA).
Ce livre présente un grand intérêt pour les milieux de formation (collèges, univer- sités, etc.) et d’intervention préoccupés par les besoins d’adaptation des familles. Il est nourri par les réflexions de chercheurs venant de différents pays et d’horizons disci- plinaires multiples. Il s’appuie sur l’analyse commune des articles scientifiques publiés récemment et décrivant des recherches ayant engagé la participation des membres de la famille des personnes ayant un TSA ; et particulièrement de leurs parents.
En proposant une compréhension du vécu de ces familles à partir d’une approche systé- mique, l’ouvrage invite à considérer chacun des membres en fonction de ses forces et de ses capacités d’adaptation. Il met en évidence les principaux facteurs de protec- tion et les stratégies de soutien adaptées à leurs réalités respectives. Il présente des leviers d’amélioration du mieux-être et de la qualité de vie des personnes, de leurs parents, frères, sœurs et autres proches.
... In the provision of a balanced diet, the high cost of food items is also challenging for the parents. Sharpe and Baker (2007) endorsed that many intervention strategies require long hours of one-to-one interaction with a trained therapist, and the use of costly foods or drug supplements. Parents of a child with autism often face greater outlays of time and money than they would for a typically developing child. ...
... Besides the medical cost and custodial care, costs for livelihood and other basic needs are waiting to be covered by the parents. Furthermore, the impact of autism on parents' labor market participation was noted by Gould (2004) who stated one or both parents often must reduce work hours or step out of the labor market altogether (as cited in Sharpe & Baker, 2007). Financial stresses of parents are also linked to costs of unfunded therapies, unexpected costs, and the necessity of having flexible work schedule/loss of potential earning (Bevan-Brown, 2004; Hastings & Johnson, 2001; Gupta & Singhal, 2005). ...
Little is known about the financial challenges of autism. This study looks into the financial challenges faced by parents of a child living with autism in Addis Ababa, Ethiopia. Twelve in-depth interviews and four key informant interviews were held with the professionals in Joy and Nehemiah Autism Centers. The participants were selected via the convenience sampling method. The data were transcribed and analyzed through thematic data analysis. All the participants underlined that caring for a child with Autism Spectrum Disorder (ASD) requires extra cost, attention, and effort. Most of the participants complained about the financial burden in relation to the cost of fulfilling the basic needs (high cost of food and clothing), transportation, and medical expenses. The system has to proactively work to address the financial and other concerns of the parents. The service is limited and unsatisfactory compared to the need. On the service provision, the government should try and address the different unmet needs and challenges of these children and their parents by providing proper attention and financial support.
... In the provision of a balanced diet, the high cost of food items is also challenging for the parents. Sharpe and Baker (2007) endorsed that many intervention strategies require long hours of one-to-one interaction with a trained therapist, and the use of costly foods or drug supplements. Parents of a child with autism often face greater outlays of time and money than they would for a typically developing child. ...
... Besides the medical cost and custodial care, costs for livelihood and other basic needs are waiting to be covered by the parents. Furthermore, the impact of autism on parents' labor market participation was noted by Gould (2004) who stated one or both parents often must reduce work hours or step out of the labor market altogether (as cited in Sharpe & Baker, 2007). Financial stresses of parents are also linked to costs of unfunded therapies, unexpected costs, and the necessity of having flexible work schedule/loss of potential earning (Bevan-Brown, 2004;Hastings & Johnson, 2001;Gupta & Singhal, 2005). ...
Little is known about the financial challenges of autism. This study looks into the financial challenges faced by parents of a child living with autism in Addis Ababa, Ethiopia. Twelve in-depth interviews and four key informant interviews were held with the professionals in Joy and Nehemiah Autism Centers. The participants were selected via the convenience sampling method. The data were transcribed and analyzed through thematic data analysis. All the participants underlined that caring for a child with autism spectrum disorder (ASD) requires extra cost, attention, and effort. Most of the participants complained about the financial burden in relation to the cost of fulfilling the basic needs (high cost of food and clothing), transportation, and medical expenses. The system has to proactively work to address the financial and other concerns of the parents. The service is limited and unsatisfactory compared to the need. On the service provision, the government should try and address the different unmet needs and challenges of these children and their parents by providing proper attention and financial support
... However, it should be noted that the sample in this study was largely categorized as middle or upper class, as the regions in Saudi Arabia where participants lived are considered to be well-positioned financially. In contrast, Sharpe and Baker (2007) found that families of students with autism had lost their future financial security and some even went bankrupt. Students with ASD may therefore not be able to enjoy the same quality of life as other students. ...
... Specialized childcare is expensive, and the duration of care often has to be longer than that required for children without ASD. In the United States, Sharpe and Baker (2007) cited the example that whilst mainstream schools may offer language and speech therapy, families often cannot afford the high cost of behavioral interventions for each child with ASD, and even if they could, the school would not have the necessary staff. Montes and Halterman (2008) found that parents of children with ASD have to spend a greater percentage of their income on their children. ...
Whilst there has been a growing interest in children's welfare in recent years, there has been a lack of consideration for those with special needs or health conditions such as autism spectrum disorder (ASD). Both children with ASD and neurotypical children may be affected by low self-esteem, poor physical condition, or psychological distress at school, which can affect their quality of life. It is therefore important for children and young people to have their quality of life measured and understood. While, for the Arab world, including Saudi Arabia, there has been the translation of health-related quality of life tools, there is a need to ensure their validity compared to the original English language versions. In light of this need, this paper presents the development and application of the KIDSCREEN-52 method to measure the quality of life for children with ASD and neurotypical children in schools in Saudi Arabia. A quantitative approach was employed to achieve the development of the method consisting of instrument translation and the standardized assessment of the quality of life for Saudi pupils. This developed method was found to independently and analytically assess the quality of life in Saudi pupils. The results from the application of the developed instrument revealed that although children without ASD rated their quality of life higher than those with ASD, overall, most Saudi Arabian students with ASD enjoy a reasonable quality of life. The findings of this study should be of interest to educators and individuals working with and on behalf of school-aged children and young people in foreign language settings where the application of development instruments could reveal the health-related quality of life.
... In the provision of a balanced diet, the high cost of food items is also challenging for the parents. Sharpe and Baker (2007) endorsed that many intervention strategies require long hours of one-to-one interaction with a trained therapist, and the use of costly foods or drug supplements. Parents of a child with autism often face greater outlays of time and money than they would for a typically developing child. ...
... Besides the medical cost and custodial care, costs for livelihood and other basic needs are waiting to be covered by the parents. Furthermore, the impact of autism on parents' labor market participation was noted by Gould (2004) who stated one or both parents often must reduce work hours or step out of the labor market altogether (as cited in Sharpe & Baker, 2007). Financial stresses of parents are also linked to costs of unfunded therapies, unexpected costs, and the necessity of having flexible work schedule/loss of potential earning (Bevan-Brown, 2004; Hastings & Johnson, 2001; Gupta & Singhal, 2005). ...
Little is known about the financial challenges of autism. This study looks into the financial challenges faced by parents of a child living with autism in Addis Ababa, Ethiopia. Twelve in-depth interviews and four key informant interviews were held with the professionals in Joy and Nehemiah Autism Centers. The participants were selected via the convenience sampling method. The data were transcribed and analyzed through thematic data analysis. All the participants underlined that caring for a child with Autism Spectrum Disorder (ASD) requires extra cost, attention, and effort. Most of the participants complained about the financial burden in relation to the cost of fulfilling the basic needs (high cost of food and clothing), transportation, and medical expenses. The system has to proactively work to address the financial and other concerns of the parents. The service is limited and unsatisfactory compared to the need. On the service provision, the government should try and address the different unmet needs and challenges of these children and their parents by providing proper attention and financial support.
... In the provision of a balanced diet, the high cost of food items is also challenging for the parents. Sharpe and Baker (2007) endorsed that many intervention strategies require long hours of one-to-one interaction with a trained therapist, and the use of costly foods or drug supplements. Parents of a child with autism often face greater outlays of time and money than they would for a typically developing child. ...
... Besides the medical cost and custodial care, costs for livelihood and other basic needs are waiting to be covered by the parents. Furthermore, the impact of autism on parents' labor market participation was noted by Gould (2004) who stated one or both parents often must reduce work hours or step out of the labor market altogether (as cited in Sharpe & Baker, 2007). Financial stresses of parents are also linked to costs of unfunded therapies, unexpected costs, and the necessity of having flexible work schedule/loss of potential earning (Bevan-Brown, 2004;Hastings & Johnson, 2001;Gupta & Singhal, 2005). ...
Little is known about the financial challenges of autism. This study looks into the financial challenges faced by parents of a child living with autism in Addis Ababa, Ethiopia. Twelve in-depth interviews and four key informant interviews were held with the professionals in Joy and Nehemiah Autism Centers. The participants were selected via the convenience sampling method. The data were transcribed and analyzed through thematic data analysis. All the participants underlined that caring for a child with autism spectrum disorder (ASD) requires extra cost, attention, and effort. Most of the participants complained about the financial burden in relation to the cost of fulfilling the basic needs (high cost of food and clothing), transportation, and medical expenses. The system has to proactively work to address the financial and other concerns of the parents. The service is limited and unsatisfactory compared to the need. On the service provision, the government should try and address the different unmet needs and challenges of these children and their parents by providing proper attention and financial support.
... Similar to a previous study, having a child with ASD significantly decreased the likelihood of living in a higher-income household family (11). Sharpe et al. reported that family income, autism symptoms, and ASD-related therapy costs were associated with financial problems in families with autistic children under the age of 19 (22). The age of children, the family income, and the combined disorder of children were related factors of direct and indirect costs (23). ...
... Callander et al. reported that autistic children's age (2-11 years) was relevant to the sum of absentee days and the dissatisfactory working status of parents (24). Mothers' education level, rural residence, and comorbidity count of children influenced the state health expenditure in families of children with autism (22). ...
The study aimed to investigate the economic costs in families of children with autism spectrum disorder (ASD) and explored how the time interval from diagnosis to treatment time interval from the date children first diagnosed with ASD to the date of first speech/behavior treatment influenced the economic costs. It was a cross-sectional study that recruited families with autistic children in Changsha, Hunan Province of China during March to November 2018. A self-designed questionnaire was applied to collect ASD-related economic costs in the two vital periods including the 12-month period after diagnosis and the most recent 12 months during the course of ASD. In total, 136 families with autistic children completed the interview. The results showed that 46.3% of children started intervention within 1 month. The median of total economic costs of these families in the 12-month period after diagnosis and the most recent 12 months was 26,502.26 RMB and 29,411.91 RMB, respectively. Compared with the time interval shorter than 1 month, time interval over 6 months was significantly associated with high direct economic costs (β SD = 0.308, 95% CI = 0.177, 1.254), inpatient/outpatient and drugs costs (β SD = 0.276, 95% CI = 0.104, 1.181), direct non-medical costs (β SD = 0.287, 95% CI = 0.140, 1.206), and total economic burden (β SD = 0.311, 95% CI = 0.186, 1.262); besides, time interval between 4 and 6 months was significantly related to large indirect costs (β SD = 0.230, 95% CI = 0.098, 1.363) in the 12-month period after diagnosis. Similarly, time interval between 1 and 3 months was significantly associated with high direct non-medical costs (β SD = 0.198, 95% CI = 0.004, 1.013) in the 12-month period after diagnosis. However, time interval from diagnosis to treatment was not correlated to economic costs in the recent 12 months. In the long term, shortening the time interval from diagnosis to treatment would reduce the economic burden on families, especially in the 12-month period after diagnosis.
... OSB olan bir çocuğa sahip olmak, ailelerin artan stres, uyku yoksunluğu ve yorgunluklarının yanı sıra fiziksel ve zihinsel işlevlerden ödün vermesi anlamına da gelmektedir (Giallo vd., 2013;Seymour vd., 2013). Toplumun ön yargıları, artan bakım sorumlukları ve OSB olan çocukların eğitimi sürecindeki yüksek mali talepler ailelerin sosyalleşme fırsatlarını azaltabilir ve çevrelerinde olumlu değişiklikler yapma kapasitelerini engelleyebilir (Gray, 2008;McCann vd., 2012;Sawyer vd., 2010;Sharpe & Baker, 2007). Tüm bu olumsuz nedenler annelerin yaşam kalitesi düzeyinde gerilemeye sebep olmakta ve ailelerin yaşam kalitelerinde normal gelişim gösteren bireylere göre anlamlı bir düşüş gözlenmesine yol açmaktadır (Beadle-Brown vd., 2009;Yirmiya & Shaked, 2005). ...
... Having a child with ASD also means that parents' physical and mental functions are affected as well as increased stress, sleep deprivation and fatigue (Giallo et al., 2013;Seymour et al., 2013). Community prejudices, increased care responsibilities, and high financial demands in the education process of children with ASD can reduce families' opportunities to socialize and hinder their capacity to make positive changes in their environment (Gray, 2008;McCann et al., 2012;Sawyer et al., 2010;Sharpe & Baker, 2007). All these negative points cause a decrease in the quality of life compared to families who have typically-developing children (Beadle-Brown et al., 2009;Yirmiya & Shaked, 2005). ...
Giriş: Bu araştırmada, Otizm Spektrum Bozukluğu (OSB) olan çocuğa sahip anneler tarafından uygulanan uyarlanmış fiziksel aktivite (UFA) programının annelerin yaşam kalitesi üzerindeki etkilerinin incelenmesi amaçlanmıştır.
Yöntem: Karma modelde desenlenen araştırmaya OSB olan çocuğa sahip 24 anne katılmıştır (uygulama grubu = 12, kontrol grubu = 12). Uygulama grubunda yer alan anneler ve OSB olan çocukları ile birlikte 12 hafta süresince UFA programı yürütülmüştür. UFA programı öncesi, annelerin programda yer alan aktiviteleri uygulama becerisi kazanmaları için üç gün süreyle aile eğitimi oturumları düzenlenmiştir. Araştırmanın nicel verileri Beach Center Aile Yaşam Kalitesi Ölçeği aracılığıyla, nitel verileri ise yarı yapılandırılmış görüşme formu kullanılarak elde edilmiştir.
Bulgular: Bulgular, annelerin yaşam kalitelerinde UFA programı öncesi ve sonrası arasında olumlu yönde anlamlı farklılık olduğunu göstermiştir. Araştırmadan üç hafta sonra elde edilen izleme testinde, UFA programı sonrası annelerin yaşam kalitelerinde gözlenen olumlu yöndeki değişimin devam ettiği belirlenmiştir.
Tartışma: Sonuç olarak, anneler tarafından uygulanan UFA programının araştırmaya katılan annelerin yaşam kaliteleri üzerinde olumlu bir etki oluşturduğu ortaya konulmuştur.
... In addition, these mothers had to provide full care for their children during the outbreak, which negatively affected their social activities and daily routine (Jiu and Rungreangkulkij 2019). As with the subjects of previous research, the mothers in this study experienced financial stress, which is typically caused by low income and a lack of financial support (Hyassat 2013;Sharpe and Baker 2007), and which strains marital relationships between mothers and fathers of children with ASD (Landon et al. 2018;Papp and Hartley 2019). In this study, mothers reported experiencing all of these stresses and relational tensions as a result of having their autistic children at home throughout the day. ...
(1) Background: The lockdown that was forced by the Jordanian government as part of the attempt to contain the COVID-19 outbreak included extreme measures such as home confinement and the shutting down of schools’ special education centers. This study explores the experiences of mothers of children with autism spectrum disorder (ASD) during this significant life disturbance. (2) Methods: Eleven mothers of children with ASD took part in semi-structured telephone interviews, which were transcribed verbatim and underwent thematic analysis. (3) Results: The analysis was conducted in an iterative consensus-building process to identify mothers’ experiences, concerns, challenges, coping strategies, and perceived needs during the lockdown. The main themes that emerged from the analysis were maternal stress, maternal fears, and maternal hopes. Our findings indicate that the COVID-19 outbreak greatly affected the family lives of the mothers interviewed, which required them to optimize their coping strategies and resilience. (4) Conclusions: The mothers faced significant difficulties during the pandemic and there is an urgent need to support them on multiple levels. Additionally, our findings reveal the need for more research that takes Jordan’s cultural context into account when determining how best to support children with ASD and their parents.
... During this time, in Poland a large part (41). However, diet modifications may be among the factors strongly associated with the likelihood of financial problems in families that have a child with autism (42). Careful examination of exposure to different diets combined with broad analytical methods are necessary to understand fully the relationship between diet and autism and its underlying causal mechanisms, which may result in optimisation of diet composition. ...
Background: The high intake of nuts, seeds, berries and cruciferous vegetables has beneficial effects on the immune system, as well as communication skills and behaviour. Gluten-and/or casein-free diets are the most common interventions in ASD patients; however, scientific evidence for their use is poor. Objective: The aim is to explore the relationship between the implementation of a gluten-free diet or a casein-and gluten-free diet in ASD children and the frequency of consumption of nuts, seeds, berries and cruciferous vegetables. Methods: A sample of 88 ASD patients and their mothers was followed for 12 months after making their free choice of a gluten-free diet, a gluten-and casein-free diet or a regular diet. The Food Frequency Questionnaire (FFQ) was used to gather information about the frequency of consuming assortment groups of products. Results: Children with ASD on a gluten-and casein-free diet have significantly higher intake of seeds, berry fruits and cruciferous vegetables than controls, while patients on a gluten-free diet consumed more frequently seeds and cruciferous vegetables. In both groups, after dietetic intervention, the frequency of nut consumption tended to be higher than in patients on a regular diet. Conclusions: Unflagging interest and frequently reported subjective feelings of improvement in parents of autistic children on elimination diets may be due to the healthy balance of modified diets and their multidirectional impact.
... It includes health sector costs (direct costs), the value of decreased or lost productivity by the patient (indirect costs), and the cost of pain and suffering (intangible costs)". Like many other childhood disabilities, parents having a child with Down syndrome very often face difficulties in terms of time and money when compared with a neurologically typical child [19]. Down syndrome children need specialized childcare treatment which incurs heavy costs and has to be sustained for a longer period [20]. ...
Background
Financial burden is a common phenomenon, often noticed in the caregivers of children with Down syndrome. It echoes adverse effects on the caregiver’s mental and physical health. The economic burden covers direct healthcare costs, direct non-health-care costs, and indirect costs and is substantial for the family of a person with Down syndrome, as well as for society. Evidence, in this area, is necessary to reduce mental stress and promote financial well-being among caregivers.
Methods
In this review, quantitative studies that assess the economic burden on caregivers of children with Down syndrome will be considered. We will perform a systematic literature search conducted from the year 2000 to 2022 on electronic databases CINAHL, EBSCO, EMBASE, PubMed, Scopus, Web of Science, and EconLit. An additional gray literature search will be carried out. Two researchers will independently conduct the screening and data extraction and assess the risk of bias.
Discussions
The review attempts to methodically analyze the economic burden among caregivers of children with Down syndrome from the societal perspective and individual perspectives. The current study will provide an evidence base to researchers, academicians, and society in identifying need-based learning to caregivers, and the selection of appropriate therapies for children suffering from Down syndrome.
Systematic review registration
PROSPERO CRD42021265312
... However, barriers, including an insufficient number of trained providers, the expense of services, and geographic and scheduling constraints limit the real-world applications of existing evidence-based interventions (Sharpe & Baker, 2007;Thomas et al., 2007). In particular, systemic inequities in access to diagnosis and early intervention in the United States affect Black and Latinx families and compound socioeconomic disparities (Angell et al., 2018;Durkin et al., 2015;Maenner et al., 2021;Zuckerman et al., 2014). ...
Online Parent Training in Early Behavioral Intervention (OPT-In-Early) is a self-directed resource for caregivers of autistic children. Sixty-three parent–child dyads from three states in were randomized to the OPT-In-Early or treatment as usual group. Parents in both groups completed baseline and post-treatment visits, which were targeted for 4 months apart but allowed to go up to 6 months. Compared to parents in the treatment as usual group, parents randomized to OPT-In-Early learned more evidence-based intervention principles from baseline to post-treatment and were rated by observers blind to group and time as increasing their use of these strategies during brief semi-structured interactions with their children. Parent participation in OPT-In-Early did not significantly influence children’s social communication as coded from one observation session. Results suggest that parents acquired knowledge and skills in intervention techniques from OPT-In-Early. Longer trials may be needed for gains in child behavior.
Lay abstract
Early intervention can help children learn language and improve social communication. However, many barriers, including the expense of services and an insufficient number of providers, prohibit families from accessing services when their children are young. We developed a comprehensive online program for caregivers of autistic children. The program, Online Parent Training in Early Behavioral Intervention (OPT-In-Early), uses text and video demonstrations to teach caregivers effective methods for improving their children’s language, social, and adaptive skills (e.g. using utensils, toilet training), and reducing their children’s disruptive behavior. Sixty-three parents from three states participated in the study. Half of the parents received access to the OPT-In-Early program. After 4 months, parents who had access to the OPT-In-Early program learned more effective intervention strategies, and started using these strategies during interactions with their children, than parents who did not receive access to the program. Parent participation in OPT-In-Early did not significantly influence children’s social communication compared to children whose parents did not have access to OPT-In-Early. A longer duration of parents using learned intervention skills with their children may be needed for children’s social communication skills to improve.
... Numerous surveys have provided insight into the financial difficulties of families who have children with ASD and other developmental disabilities. Sharp and Baker (2007) examined data of 333 respondents from the Family Experiences with Autism survey which revealed that for these families, financial difficulties were most influenced by costs of medical services and therapies as well as having generally low incomes. Similarly, Baker and Drapela (2010) surveyed 326 parents of children with ASD and determined that 66% of the parents felt that mothers' employment outside the home was most effected by having a child with ASD. ...
Parents have long been concerned with the transition to adulthood of their children with intellectual and developmental disability (IDD) particularly with financial issues. The purpose of this study was to explore the financial concerns of mothers of adults with IDD. Five mothers of adults with IDD participated in a focus group to share their experiences, opinions, concerns, and challenges related to finances. Five themes emerged from the qualitative data analysis: (a) job-related difficulties, (b) living expenses, (c) access to essential services, (d), skills deficits and/or challenging behavior, and (e) long-term care. Mothers in general indicated tremendous financial burdens, loss of income, and expressed concerns about long-term care of their children with IDD. These themes are discussed and implications for practice and research are provided.
... A prominent and consistent finding within this corpus of research is that families of a child with autism have disproportionately worse quality of life outcomes than families that do not have a child with autism. This is reflected across numerous indicators of quality of life (see Beach Center on Disability, 2003), including divorce rates (Hartley et al., 2010;Karst & Van Hecke, 2012), mental health challenges (Myers et al., 2009), health care costs (Sharpe & Baker, 2007), and community involvement (Iadarola et al., 2019). Recent literature reviews on programs designed to improve the quality of life of family members with a child with autism, highlight that mindfulness and cognitive-behavioral therapy demonstrate some promising findings, but that future studies are needed to evaluate these interventions within the context of rigorous and replicated experimental designs (Catalano et al., 2018;Da Paz & Wallander, 2017;Lichtle et al., 2020). ...
For decades, researchers and providers of adult-directed early behavioral intervention services have made conceptual arguments linking the receipt of such services to improvements in family and family member quality of life. To date, there has not been a review of the literature to empirically evaluate this claim. Therefore, we conducted a systematic review and identified 15 studies contributing 40 effect sizes to evaluate the relationship between the receipt of early behavioral intervention and family quality of life. Our analyses did not detect that there was a robust and meaningful difference in the quality of life of families with a child that did and did not receive early behavioral intervention. Considerations to inform future research are presented; and implications are discussed with respect to parents, pediatricians, providers, and those involved in the public dissemination of evidence-based treatments for individuals with autism.
... However, a lack of coordination or comprehensive services can exacerbate this stress, as well as limited accessibility to services (Shelton & Stepanek, 1994). Unfortunately, these problems are all too common for families seeking behavior-analytic services, which can be costly (Lindgren et al., 2016;Sharpe & Baker, 2007) and require lengthy waits to access (Jones et al., 2017), all of which can further increase family stress levels (Rivard et al., 2014). To address this concern, FCC approaches focus on building policies and systems that are flexible, accessible, and comprehensive to meet the needs of all families (Shelton & Stepanek, 1994). ...
An essential aspect of behavior-analytic services is collaborating with stakeholders to develop interventions that incorporate stakeholder preferences, needs, and contextual variables in addition to those of the client. Recent research has illuminated a gap in practitioners' use of compassionate care to develop interventions that take into account family values and dynamics. Family-centered care is an approach that emphasizes the client as part of a larger family system and is used in a variety of medical and mental health services to promote family-provider collaboration and improve care. Given the importance of collaboration, shared decision making, and consideration of contextual variables when implementing behavior-analytic services , we introduce an adaptation of the family-centered care approach for behavior analysis. We provide practical resources for behavior analysts to assess and address family contextual variables, tools for promoting collaboration throughout service delivery, and a framework for navigating misalignment among client, family, and practitioner preference.
... Like many other childhood disabilities, parents having a child with DS very often face di culties in terms of time and money when compared with a neurologically typical child. [19] DS children need specialized childcare treatment which incurs heavy costs and has to be sustained for a longer period. [20] Due to the proliferating healthcare utilization associated with this condition, the economic costs involved with down syndrome are estimated to rank as one of the highest among intellectual disabilities. ...
Background: Financial burden is a common phenomenon, often noticed in the caregivers of children with down syndrome (DS). It echoes adverse effects on the caregiver's mental and physical health. The economic burden of DS covers direct healthcare costs, direct non-health-care costs, and indirect costs. The economic burden of DS is substantial for the family of a person with DS, as well as for society. A systematic review of the caregivers of children with down syndrome is necessary to facilitate evidence for a future utility to reduce mental stress and promote financial well-being among caregivers.
Methods: In this review, quantitative studies that assess the economic burden on caregivers of children with down syndrome will be considered. We propose to perform a systematic literature search conducted from the year 2000-2021 on CINAHL, EBSCO, EMBASE, PubMed, Scopus, Web of Science, EconLit and also an additional grey literature search will be carried out. Two researchers will independently conduct the screening, data extraction and assess the risk of bias. Quality assessment of the included studies will be carried out.
Discussions: The review attempts to methodically analyse the economic burden among caregivers of children with down syndrome from the societal perspective and individual perspective. The current study will provide an evidence base to researchers, academicians, and society in identifying the need-based learning to caregivers, and selection of appropriate therapies for children suffering from down syndrome.
PROSPERO registration number: CRD42021265312
... In some cases, some mothers have to reduce the frequency of therapy a child needs before the Covid-19 pandemic due to financial constraints. This is in line with research that states that financial problems in parents who have children with autism significantly influence them to make visits to professionals as an effort to make medical interventions such as getting therapy and treatment advice [27]. Even some working mothers actually have to decide to stop working to focus on caring for their children, even though it is not the right choice because they have no other choice, as the expression in the interview with MG follows. ...
... Included studies showed that outpatient visits and medications constituted a major share of direct medical costs among individuals with ASD [9,25,29]. Literature indicates individuals with ASD have higher rates of poorer physical and mental health conditions than their counterparts without ASD which require further healthcare utilization to address these problems [5]. The present review showed that associated comorbidities predict higher healthcare costs [10,12,27]. ...
Background
Individuals with autism spectrum disorder (ASD) are more likely to use healthcare than their counterparts without disabilities, which imposes high medical costs to families and health systems. This study aimed to investigate healthcare costs and its determinants among individuals with ASD.
Methods
In this systematic review, we searched online databases (Web of Science, Medline through PubMed and Scopus) for observational and experimental studies that included data on service use and costs associated with ASD and published between January 2000 and May 2021. Exclusion criteria included non-English language articles, duplicates, abstracts, qualitative studies, gray literature, and non-original papers (e.g., letters to editors, editorials, reviews, etc.).
Results
Our searches yielded 4015 articles screened according to PRISMA guidelines. Of 4015 studies identified, 37 articles from 10 countries were eligible for final inclusion. Therapeutic interventions, outpatient visits and medications constituted the largest proportion of direct medical expenditure on individuals with ASD. Included studies suggest lack of health insurance, having associated morbidities, more severe symptoms, younger age groups and lower socioeconomic status (SES) are associated with higher medical expenditure in individuals with ASD.
Conclusions
This systematic review identified a range of factors, including lower SES and lack of health insurance, which are associated with higher healthcare costs in people with ASD. Our study supports the formulation of policy options to reduce financial risks in families of individuals with ASD in countries which do not have a tax-based or universal health coverage system.
... They may experience difficulties looking for appropriate and affordable child care, including medical, therapeutic, and educational interventions, which are usually out-ofpocket costs. Caring for a child with a special need is a life-long commitment that has a huge financial implication, facing the possibility of bankruptcy and preceding savings so that money is used for daily expenses (Baker & Sharpe, 2007). ...
Primary caregivers of children with special needs encounter a host of new challenges and face reality and shock of diagnosing the disability itself. This study employed a descriptive research method to identify and describe the struggles of 18 Ivatan primary caregivers and their coping strategies in terms of gender in the Province of Batanes. Inventory questionnaires were used to gather data. Using Mean Analysis and ANOVA One-Way Repeated Measures, the Ivatan primary caregivers' prevalent struggles are Financial, Health, Social, Family, and Emotional. In terms of gender, both males and females experienced all the areas of struggle. Ivatan primary caregivers’ struggles experienced, the more prevalent coping strategies used by Ivatan primary caregivers are Problem Solving, Cognitive Restructuring, and Social Support. Male and female primary caregivers used all the coping strategies except Social Withdrawal and Self-Criticism. Males utilized problem-solving the more while females utilized Cognitive Restructuring. Despite the various struggles that the Ivatan primary caregivers experienced, they find ways to cope with them.
... Words related to work add to the interpretation that the posts were focused on the ABA therapist profession or how ABA worked. It is surprising that more weight was not associated with the sentiments home and money in light of concerns related to insurance coverage related to ABA-based intervention and the impact of ABA-based intervention in the home (30). ...
Background: It is critical for professionals to understand the discourse landscape within various online and social media outlets in order to support families of children with autism in treatment decision-making. This need is heightened when considering treatments that have garnered excitement and controversy, such as applied behavioral analysis (ABA) therapy.
Method: The specific aims of this study were to identify the main themes in Reddit posts about ABA-based interventions for autism using topic modeling, to examine the linguistic aspects of Reddit conversations using the Linguistic Inquiry and Word Count (LIWC) analysis, and to examine the relationship between linguistic aspects and user category (i.e., pro- vs. anti-ABA vs. undecided, parent vs. professional vs. an individual with autism).
Results: The topic modeling resulted in 11 themes that ranged across various elements, such as autism as a condition and its management, stakeholders, and consequences of autism and the support needed. The posts of individuals were focused on personal experiences and opinions as opposed to clinical and research information sharing. Linguistic analysis indicated that the posts reveal an intimate stance rather than an empirical stance.
Conclusions: Results provide insight into perspectives of ABA. This type of research may help in developing and distributing appropriate and evidence-based information.
... Additional cost is also associated with extracurricular activities for children with disabilities. Health insurance may sometimes cover the cost of medical tests used in the diagnostic process and the cost of prescription medication, but won't pay for behavioral or other types of therapy for autism (Sharpe and Baker 2007). ...
... Parents of children with ASD report higher levels of parenting stress and lower well-being at the time of diagnosis (Dabrowska & Pisula, 2010;Hayes & Watson, 2013;Rezendes & Scarpa, 2011) relative to parents of children with other types of developmental disabilities or conditions, often driven by the unique child-related challenges that stem from their child's profile of ASD symptoms (American Psychiatric Association, 2013) and co-occurring behavior problems (Maskey et al., 2013;Valicenti-McDermott et al., 2015). The added burden of navigating the special education (Quintero & McIntyre, 2011) and healthcare (Chiri & Warfield, 2012;Kogan et al., 2008) systems, as well as dealing with the financial cost of ASD treatment and services (Sharpe & Baker, 2007), also contribute to parenting stress. ...
Over the past 10 years, identification of Autism Spectrum Disorder (ASD) risk has dramatically increased due to the wide-spread implementation of screening programs; yet, there is limited understanding about parent perceptions and experiences during the time period when risk is identified, but prior to receiving a formal diagnosis—a period that can last months to years given the long wait-lists for formal ASD evaluations. The current study aimed to examine parent perceptions of family impact (i.e., the impact their child’s behaviors have on the family) between the time of risk-identification and formal diagnosis among 277 children identified as at-risk for ASD through screening positive in primary care. We aimed to compare family impact among those whose child met diagnostic criteria for ASD and those who did not. Parents of children who received a non-ASD diagnosis reported a higher baseline level of family impact (F[1, 274] = 5.82, p = .017); however, perceived difficult child behavior was a stronger predictor of family impact (t[6] = 13.11, p < .001) than later diagnostic group (t[6] = − 2.10, p = .037), and child functioning did not predict family impact (t[6] = -0.31, p = .76). These results suggest that in this population, perceived difficult child behavior is a stronger predictor of family impact than later diagnostic category and should be considered an important factor in family support.
... In paper [7] proposed to, the primary recognition is made, the higher the result of enlargement of a shaver as a result of the first motive of recognition for that the kid to appreciate access to facility. Within the last 10 years, there are enlargements at intervals the study of autism. ...
... Family involvement can vary widely among families in comparable socioeconomic status categories; therefore, exploring variables related to socioeconomic status may enhance understanding of family involvement patterns (Hoover-Dempsey et al., 2005). One study with families of autistic children found that there was no significant difference in income level or receipt of public services between parents who reported having financial problems due to ASD-related care costs and parents who did not report having these financial problems (Sharpe & Baker, 2007). The ways in which families experience This document is copyrighted by the American Psychological Association or one of its allied publishers. ...
Family-school partnerships are crucial for promoting positive outcomes and serving as a protective factor for children at-risk for poor school outcomes (Christenson & Sheridan, 2001). This may be particularly important for autistic children, who are at increased developmental risk (Garbacz et al., 2016). However, little research has examined variables related to dimensions of these partnerships for parents and teachers of autistic children. The present study examined family socioeconomic resources in relation to two dimensions of family-school partnerships (relationship quality and family involvement) among parents of autistic children, as well as dyadic perceptions of relationship quality among parents and teachers of autistic children. Data were collected across two time points (Time 1 N = 68 parents, child ages = 5-11; Time 2 parent-teacher dyad N = 22, child ages = 7-13). Results suggest that (a) higher appraisal of financial resources was associated with higher parent-reported family involvement after controlling for child autism spectrum disorder (ASD) characteristics and (b) higher parent-reported relationship quality and family involvement at one time were significantly associated with positive independent (parent and teacher) and congruent ratings of parent-teacher relationship quality 2 years later. Study limitations, future directions, and practical implications are discussed. (PsycInfo Database Record (c) 2021 APA, all rights reserved).
... These differences result in challenging distressing behaviour patterns (Adamson et al. 2006), and ultimately contributed to a poorer quality of life (Dunn 2001) for both the child and their family. Additionally, it increases the financial burden of families that try various therapies to overcome these challenges (Sharpe and Baker 2007, Kogan et al. 2008, Ou et al. 2015, resulting in mothers of children with autism reporting greater distress and depression than mothers of children without autism (Kiani et al. 2014). Therefore, the burden of care for children with autism should be given due attention, with more research data gathered to understand how and where an intervention can be targeted to reduce this public health burden. ...
Autism is a condition manifested by persistent deficits in social communication and social interaction across multiple contexts, and, sensory processing difficulties may further affect childhood-occupation and hinders their overall development. This study examines the sensory-processing and childhood participation of children with autism (6 to 10 years), and ‘age/gender-matched typical children as control. The Sensory Processing (SSP) and the Participation of childhood-occupation (PICO) measures were used to collect data from 93 parents of children with autism and 95 parents of typically-developing’ children, recruited from hospitals, school and care centres. This study had 74 percent (n = 72) male participants (i.e. 4:1 male to female ratio) in the autism group, and found sensory processing difficulties were associated with specific childhood-participation limitation. Children with autism had lower participation (across level, frequency and enjoyment) than the typical children. Sensory-processing’ difficulties for the children with autism (n = 93) were at 68.8 percent, compared to 21.5 percent in the typical group (n = 95), and were significantly different (p < 0.001). The differences in sensory-processing difficulties were significant (p < 0.05) between groups, across all domains, except for movement sensitivity (p > 0.28). Auditory filtering was the sole sensory-processing difficulty with significant correlations with all three dimensions of participation [i.e. difficulty (r = 0.36, p < 0.01), frequency (r = 0.22, p < 0.05) and enjoyment (r = 0.27, p < 0.01)]. Our finding highlighted that auditory-filtering difficulties is a key sensory processing difficulty, and it significantly lower the childhood-participation in the autism group. Adding to a growing body of literature on assessment in autism, there is a need for early screening, and to engage parents in early intervention to improve specific sensory processing deficits but also to focus on the child’s strengths, for a comprehensive supportive care.
... Barriers, including the expense of services and an insufficient number of available providers, preclude many children with ASD from receiving intensive early intervention (Nguyen et al. 2016;Sharpe and Baker 2007;Thomas et al. 2007). In the United States, children can wait an average of 3 years between receiving a diagnosis of ASD and beginning intervention (Yingling et al. 2018). ...
Objective:
To examine the effect of a brief Enhanced training using the information-motivation-behavior (IMB) change model on improving providers' surveillance rates and accuracy of autism spectrum disorder (ASD) detection.
Method:
Toddlers (n = 5,672) were screened for ASD during their pediatric well-child visits. Pediatric providers (n = 120) were randomized to receive Enhanced (incorporating components of the IMB model) or Control training. Providers indicated whether they had an ASD concern at each well-child visit. Toddlers who were positive on any screener and/or whose provider indicated ASD concern were invited for a diagnostic evaluation. Differences in provider-indicated ASD concerns before and after training were evaluated using log-linear analyses.
Results:
The Enhanced training did not have a significant effect on provider-endorsed ASD concerns (p = 0.615) or accuracy of endorsing concerns (p = 0.619). Providers in the Control training showed a significant reduction in indicating whether or not they had concerns after the training (from 71.9% to 64.3%), which did not occur in the Enhanced group. The Enhanced training led to more frequent endorsements of language (χ2 = 8.772, p = 0.003) and restricted and repetitive behavior (χ2 = 7.918, p = 0.005) concerns for children seen after training.
Conclusion:
Provider training had limited impact on ASD surveillance, indicating the importance of using formal screening instruments that rely on parent report during well-child visits to complement developmental surveillance. Future research should examine whether providers who indicate specific concerns are more likely to accurately refer children for ASD evaluations.
... Sharp argues in his study that even if insurance companies cover medical tests related to diagnosis, they never pay for therapies for behaviors. [26] It is suggested that financial supports from government and charities address such families, As Koohkan et al. found in a qualitative study, the role of various charities is very significant in access to financial support for families of sick children. [27] In addition, providing a more comprehensive insurance coverage may reduce the total financial burdens of the families. ...
BACKGROUND: Conditions and needs of autistic children have impacts on both the children and the family members who have crucial roles in raising the child. The prevalence of autism is increasing, and this fact makes it necessary to focus more on experiences of parents who have children with autism spectrum disorder (ASD). Hence, this study aimed to reflect the experiences of parents who have autistic children.
MATERIALS AND METHODS: The present study was a qualitative research with phenomenology approach which was conducted using content analysis approach. Participants were 14 parents with ASD children in Ahvaz, and they were included based on purposive sampling method. To gather the required data, semi-structured interviews were formed. Data analysis was performed by Colaizzi's seven-step method.
RESULTS: Fifty-four conceptual codes were extracted from interviews of ASD children parents. Parents of these children had two main experiences: first family related and second education and treatment problems. Family problems included three categories (financial, psychological, and family relationships). Education and treatment was categorized into three (schooling, transporting, and quality in facilities).
CONCLUSIONS: Problems mentioned by parents of autistic children highlight the need for providing training and counseling services as well as emotional supports from both society and government. Planning and implementing supportive plans empower parents to strategically face problems and eventually improve their life quality and mutual understanding.
... Barriers, including the expense of services and an insufficient number of available providers, preclude many children with ASD from receiving intensive early intervention (Nguyen et al. 2016;Sharpe and Baker 2007;Thomas et al. 2007). In the United States, children can wait an average of 3 years between receiving a diagnosis of ASD and beginning intervention (Yingling et al. 2018). ...
Early intervention with parent participation is important for facilitating skill development in children with Autism Spectrum Disorder (ASD). However, many barriers delay or prohibit families from accessing care. We describe the development and acceptability of a novel, comprehensive, self-directed online program for caregivers of children with ASD. Program effectiveness will be presented in a subsequent manuscript. The program is based on behavioral, naturalistic, and developmental principles, and teaches caregivers to use evidence-based interventions to teach developmentally appropriate targets. Approximately two-thirds of enrolled parents completed all 14 modules; barriers to completion for the additional families are described. Parents reported that the program was clear, enjoyable, and useful in teaching them interventions and in improving their children’s skills and behavior.
... ASD is forecasted to have an annual economic burden of $461 billion by 2025 (Leigh and Du 2015). This often results from challenges navigating several specialized health care needs, interacting with a variety of medical and educational professionals, and managing the differential costs of assessment and/or treatment services (Sharpe and Baker 2007). MBC in conjunction with telehealth services could alleviate the financial burden of face-to-face treatment to provide the same level of care, while eliminating barriers like transportation and childcare to ensure equal access to treatment. ...
Measurement-based care (MBC), an evidence-based approach that has demonstrated efficacy for improving treatment outcomes, has yet to be investigated in clients with Autism Spectrum Disorder. The current paper investigates the use of MBC in autistic (n = 20) and non-autistic (n = 20) clients matched on age, sex, and presenting problem. Results of change score analysis indicated that utilizing routine symptom monitoring can enhance treatment evaluation. Autistic clients participated in significantly more sessions, made significantly less progress, and were less compliant with MBC than non-autistic clients. Though hierarchical linear modeling demonstrated no significant differences in treatment slope, results indicated moderate effect size. These results inform the use of MBC in community clinics, highlighting policy implications and need for targeted measurement.
... In this situation, as shown in the results of this study, the government should provide the necessary financial support to organizations that empower families of people with autism, and insurance companies must fully cover empowerment services for these families. Laws such as "free and appropriate education for every child with a disability" can much support these families (Sharpe and Baker, 2007). As the head of Charity Foundation for Special Diseases explained a "comprehensive national document on autism" is currently being drafted. ...
Purpose
The purpose of this study was to identify the challenges and solutions in the empowerment of families of children with autism in Tabriz located in the North West of Iran.
Design/methodology/approach
In this exploratory and qualitative study, which was conducted from January to March 2019, 14 in-depth face-to-face interviews and 1 focus group (n = 5) were conducted with family empowerment experts. Data analysis was performed based on a content analysis approach via MAXQDA v 10.
Findings
Results revealed that empowerment challenges can be classified into six main themes including shortage of facilities and specialists, family-related problems, administrative and organizational, cultural and societal, financial and other problems. The most important empowerment solutions were divided into three main themes including informing and training skills by holding empowerment programs, governmental and insurance companies support, and organizational and administrative solutions.
Research limitations/implications
Limitation of this study is that families are not included; as families may also provide or challenge other solutions for empowerment based on their needs, ignoring their views may be losing part of vital information in this field. It is recommended that this research be conducted in the future from the perspective of families of people with autism and other stakeholders.
Practical implications
Based on the results of this study, stakeholders in the field of autism and the family empowerment can address the identified challenges and utilize solutions to improve the process of family empowerment and make more effective decisions in this regard.
Originality/value
Literature searches revealed a lack of any completed research in Iran specific to identifying empowerment challenges and related solutions. Efforts must be taken on root challenges which have been identified scientifically.
... In this situation, as shown in the results of this study, the government should provide the necessary financial support to organizations that empower families of people with autism, and insurance companies must fully cover empowerment services for these families. Laws such as "free and appropriate education for every child with a disability" can much support these families (Sharpe and Baker, 2007). As the head of Charity Foundation for Special Diseases explained a "comprehensive national document on autism" is currently being drafted. ...
Abstract
Purpose
The purpose of this study was to identify the challenges and solutions in the empowerment of families of children with autism in Tabriz located in the North West of Iran.
Design/methodology/approach
In this exploratory and qualitative study, which was conducted from January to March 2019, 14 in-depth face-to-face interviews and 1 focus group (n = 5) were conducted with family empowerment experts. Data analysis was performed based on a content analysis approach via MAXQDA v 10.
Findings
Results revealed that empowerment challenges can be classified into six main themes including shortage of facilities and specialists, family-related problems, administrative and organizational, cultural and societal, financial and other problems. The most important empowerment solutions were divided into three main themes including informing and training skills by holding empowerment programs, governmental and insurance companies support, and organizational and administrative solutions.
Research limitations/implications
The limitation of this study is that families are not included; as families may also provide or challenge other solutions for empowerment based on their needs, ignoring their views may be losing part of vital information in this field. It is recommended that this research be conducted in the future from the perspective of families of people with autism and other stakeholders.
Practical implications
Based on the results of this study, stakeholders in the field of autism and the family empowerment can address the identified challenges and utilize solutions to improve the process of family empowerment and make more effective decisions in this regard.
Originality/value
Literature searches revealed a lack of any completed research in Iran specific to identifying empowerment challenges and related solutions. Efforts must be taken on root challenges that have been identified scientifically.
... Thus, although adherence can help with parent stress, relief varies by the extent to which the treatment is not overly demanding. With the relatively high recommended dosage and intensity of ABA, as well as its expense (e.g., up to $30,000 per year; Sharpe & Baker, 2007), it is unsurprising that time and money would have such adverse effects on parent stress as parents adhere to the treatment. Given these findings, it is prudent to inform parents that they may experience increased levels of stress related to the demands of engaging in behavioral treatment. ...
Background
Recent studies suggest that parent involvement with behavioral treatment for behavior problems may reduce parent stress in families with a child with autism spectrum disorder (ASD). However, it is not known whether high treatment adherence to protocols is associated with reduced parent stress nor what perceptions of treatment may moderate this relation.
Method
The current study examined the relation between parents’ adherence to behavioral treatments and parent stress, and whether parents’ perceptions toward treatment moderate this association. Participants were 190 mothers, fathers, or caregivers of a child with ASD. A bivariate correlation matrix examined associations between each variable, and three separate linear regression models regressed parent stress on treatment adherence, perceptions of treatment, and the interaction of the two. Covariates included child age and severity of behavior problems.
Results
Treatment adherence had a significant negative relation with parent stress. Treatment demandingness, but neither treatment relevance nor treatment effectiveness, emerged as a moderator for the association between treatment adherence and parent stress.
Conclusions
Evidence was found for an association between treatment adherence and parent stress with partial support that perceptions of treatment moderate the association. Specifically, high treatment adherence was associated with lower parent stress, and the effect was most pronounced when treatment demandingness was low. These findings have implications for clinicians and treatment providers who are well-positioned to monitor and address parent attitudes to aid positive treatment outcomes for both the child and the parent. Moreover, clinicians can consider the impact of treatment demandingness on the whole family system.
... Families living with autism often experience financial hardship (Sharpe and Baker, 2007), and over 70% of respondents (n = 67) reported financial problems due to their care tasks. Families in Croatia may also be paying for private therapies, or for educational support in the classroom (Lisak et al., 2017), whilst systemic issues were a further source of difficulty. ...
Information and support for families of children on the autism spectrum is limited in south‐east Europe. A three‐year project, Equity and Social Inclusion Through Positive Parenting (ESIPP), was established to develop and provide parent education (PE) in autism for families in Croatia, Cyprus and North Macedonia. This paper presents findings from Croatia regarding family life and the impact of PE. Data were collected via pre‐ and post‐PE questionnaires and semi‐structured interviews. Participants discussed the impact of autism on family life, the difficulty of obtaining a diagnosis, the importance of family support (and varying experience of formal support), common experiences of stigma and social exclusion and concerns for the future. The value and benefit of PE is identified, and recognition of its impact within Croatia has ensured its ongoing provision.
... Due to the wide array of services, many individuals and families have difficulty accessing the specific services an individual may need. There are many reasons why needs remain unmet, including financial limitations, lack of available resources (Sharpe and Baker 2007), and inconsistencies in care (Bailey et al. 1992). Currently, much intervention programming is still conducted at the state level (CDC 2015), and the types of services available to this population are often dependent on policy changes; however, existing gaps between policy and clinical care are often overlooked (Doehring and Volkmar 2016). ...
Objectives
Autism spectrum disorder (ASD) is a neurodevelopmental disorder resulting in significant impairment in social and communication areas. Individuals with ASD often require a substantial degree and amount of services and expenditures throughout their lifespan. This study examined service delivery experiences of family caregivers and service providers of children with ASD.MethodsA basic qualitative research design founded in phenomenology was conducted. Ten participants were enrolled and interviewed. Interview data were collected and coded to produce a qualitative analysis of the experiences of these individuals who either care for or deliver services to children with ASD.ResultsResults indicate the top five themes for service providers and family caregivers included areas of (a) collaboration, (b) education, (c) family support/involvement, (d) child-centered care, and (e) accessibility and availability.Conclusions
These findings can contribute to better understanding and improving future service delivery for supporting family caregivers and their children with ASD.
... Accordingly, mothers of children with ASD, compared to mothers of children with SLD who are less concerned about communication problems of their children, show more negative feelings in association with the future. Furthermore, it should be noted that ASD is a complex disorder (Gupta and Singhal 2005) and there is no affordable, accessible, cost-effective, and completely effective intervention and treatment for ASD (Sharpe and Baker 2007). This can also explain the higher levels of negative feelings in association with the future in mothers of children with ASD. ...
The aim of the present study was to compare feelings of hopelessness in mothers of children with neurodevelopmental disorders. The statistical population of the study included all mothers of children with neurodevelopmental disorders in Shiraz, Iran. The sample consisted of 150 mothers of children with neurodevelopmental disorders, including 50 mothers of children with autism spectrum disorder (ASD), 50 mothers of children with intellectual disability (ID), and 50 mothers of children with specific learning disorder (SLD) and they were selected by convenience sampling method. The data were collected during the years 2015–2016. The Beck Hopelessness Scale (BHS; Beck et al.) was used for measuring the feelings of hopelessness. The one-way ANOVA and MANOVA tests were used for the data analysis. The results showed that the feelings of hopelessness and the two subscales of feelings of hopelessness, i.e. negative expectations of the future and the loss of motivation in association with the future, in mothers of children with ASD were significantly higher than those of the other two groups of mothers. It was also observed that mothers of children with ID, compared to mothers of children with SLD, had higher levels of feelings of hopelessness, negative expectations of the future, and negative feelings in association with the future. Additionally, the findings revealed that mothers of children with ASD, compared to mothers of children with SLD, had higher levels of negative feelings in association with the future. Therefore, adopting preventive and intervention programs which can help mothers of children with neurodevelopmental disorders, especially mothers of children with ASD, to overcome their feelings of hopelessness are of great importance.
In this study, the relationships between child social functioning, parenting stress, and Part C Early Intervention (EI) enrollment were examined in 227 ethnically and racially diverse, low-income families of 15- to 27-month-old children. All toddlers in the sample were identified with or at high risk for developmental delay via universal screening in primary care; 41.4% were enrolled in EI at the time of study data collection and 83.3% ultimately enrolled in EI before turning 3 years old. Generalized linear mixed model results indicated no direct relationship between EI enrollment and parenting stress, but a significant inverse association was found between child social functioning and parenting stress (β = −0.61, p = .005) that was moderated by EI enrollment ( p < .001). This suggests potential benefits of timely referral and access to EI for families of children at risk of developmental delay in historically underserved communities. Furthermore, exploratory bivariate analyses indicated that clinically elevated parenting stress related to higher worry about the child’s development and higher M-CHAT-R/F scores; EI enrollment was related to parents not working outside the home, older age of both parent and child, and lower child social functioning level.
Recent research shows that group-based psychoeducation programs designed for parents of children with ASD have grown in popularity over time. The international evidence for the effectiveness of psychoeducation programs designed for parents of children with ASD in developed societies emphasizes the importance of providing a synthesis of the effectiveness of programs in developing societies. This study's primary aim is to assess the efficacy of group-based psychoeducation programs in Turkey for parents of children with ASD. The second aim is to investigate how the programs are influenced by the potential moderators (type of involvement, research design, number of sessions, duration of sessions, and number of participants). For these purposes, a database search was conducted that included group-based psychoeducation programs for parents of children with ASD implemented in Turkey. Twelve group-based psychoeducation programs that met the inclusion criteria were included in the study. The results showed that group-based psychoeducation programs for parents of children with ASD had "medium" effects on psychological symptoms [ES(SE) = 0.65 (.08), 95%CI (0.48-0.81)], "low" effects on social skills [ES(SE) = 0.32 (.16), 95%CI (0.02-0.62)], and "high" effects on well-being [ES(SE) = 1.05 (.19), 95%CI (0.66-1.43)]. According to moderator analyses, the type of involvement and the number of sessions were statistically significant moderators of psychological symptoms, but not the research design, duration of sessions, or number of participants.
Au Québec, on observe une hausse de la prévalence du trouble du spectre de l’autisme (TSA) et des ressources limitées; ainsi, malgré de nombreux demandeurs de services, seules certaines personnes y ont accès. Dans ce contexte, la présente étude vise à connaitre la nature et distribution des attentes et besoins exprimés par les familles d’enfants ayant un TSA, et le lien de ceux-ci avec l’accès à des services d’intervention comportementale intensive (ICI). Une analyse thématique inductive des déclarations dans le formulaire de demande de service de 352 parents au sujet de leurs attentes et besoins spécifiques a été faite. Les trois thèmes (besoins et attentes) émergeant de cette analyse sont : obtenir des activités de stimulation pour l’enfant, préparer l’insertion sociale et scolaire de celui-ci et obtenir de l’aide pour améliorer la situation familiale. Les familles n’ayant pas de revenu d’emploi, et celles dont la langue d’usage des parents n’est pas le français, sont plus nombreuses à évoquer des préoccupations sur la situation familiale, alors que les familles ayant un revenu d’emploi se préoccupent davantage de l’insertion sociale et scolaire de leur enfant, et celles dont la langue d’usage est le français recherchent les activités de stimulation pour celui-ci. Les implications de ces résultats quant aux enjeux des inégalités sociales de santé seront discutées.
Autistic young adults face unique legal and financial challenges during and after the transition process that may complicate their ability to lead full and productive adult lives. Because many adults with ASD still rely heavily on their families for financial support and assistance in managing many aspects of daily life, this transitional period has important implications for the entire family system. This chapter will examine the important legal and financial implications of the transition to adulthood for individuals with ASD including issues ranging from guardianship of the person to powers of attorney for health care and finance.
Globally, governments face challenges investing in health, and this is a crucial area for most countries. Despite voiced commitments to supporting health, many healthcare systems across the world are plagued by complex financial difficulties, because of the growth of chronic illnesses, disabilities, and aging populations. There has been a longstanding understanding that growing economies are associated with healthier and longer lives, with economic booms boosting mortality rates and austerity reducing them (Frakt, 2018). Within individual country economies, there can be diversity in health outcomes, and even in affluent societies there is a persistence of health inequalities (Szreter & Woolcock, 2004). Nonetheless, broadly and overall, economic growth in affluent countries has been associated with better nutrition, stronger public health infrastructures, and more effective medical technology; thus, in countries where there is greater wealth, people tend to live longer, and childhood mortality rates are lower than those countries that lack this financial position (Frakt, 2018). Notably, inequalities, resources (economic, social and familial), and provision of services are all important issues when considering autism.
Purpose
Most parents experience stress when their children are diagnosed with some kind of disability. This paper aims to compare the level of stress among mothers of children with neurodevelopmental disorders.
Design/methodology/approach
Research sample consisted of 150 mothers of children with neurodevelopmental disorders (50 mothers of children with autism spectrum disorder, 50 mothers of children with intellectual disability and 50 mothers of children with specific learning disorder selected by convenience sampling). The Stress Response Inventory was used for measuring stress. One-way analysis of variance, multivariate analysis of variance and Scheffe post hoc tests were used for data analysis.
Findings
The results showed that the stress of mothers of children with autism spectrum disorder was significantly higher than to the other groups of mothers. It was also observed that the stress of mothers of children with intellectual disability was significantly higher than the mothers of children with the specific learning disorder.
Originality/value
Therefore, designing and implementing preventive and interventional programs to decrease the stress of mothers of children with neurodevelopmental disorders, especially mothers of children with autism spectrum disorder is necessary.
ÖZ
Otizm Spektrum Bozukluğu (OSB) teşhisi konulmuş çocukların aileleri hem tatilde hem de seyahat esnasında çeşitli zorluklarla karşılaşmaktadırlar. Bu çalışmanın amacı, OSB'ye sahip çocukları olan ailelerin tatil deneyimlerini belirlemek, tatilde yaşadıkları sorunları tespit etmek ve buna uygun pazarlama stratejileri geliştirmek adına ilgili paydaşlara öneriler sunmaktır. Araştırmada yarı yapılandırılmış odak grup görüşme tekniği kullanılmış ve Konya'da yaşayan OSB'li çocuk sahibi 17 aile ile mülakatlar gerçekleştirilmiştir. Araştırma bulguları, OSB tanısı olan çocuklara sahip ailelerin tatilleri esnasında karşılaştığı en önemli sorunların; konaklama işletmelerinin sunduğu hizmetlerin bu tür aileler için erişilebilir olmadığını ve seyahat esnasında yaşanılan sorunların ailelerin tatil deneyimlerini olumsuz etkilediğini göstermiştir. Bu durum, OSB teşhisi konulmuş çocukların ve ailelerin topluma kazandırılmasının, toplumun otizm hakkındaki farkındalığının artırılmasının gerekliliğine dikkat çekmektedir.
A B S T R A C T
Families of children diagnosed with Autism Spectrum Disorder (ASD) face various difficulties both on vacation and during travel. This study aims to determine the holiday experiences of families with children diagnosed with ASD, identify the problems they experience throughout the vacation, and provide suggestions to relevant stakeholders to develop related marketing strategies. A semi-structured focus group interview technique was conducted with 17 families in Konya. Research findings show the most critical problems of the families are that the services offered by accommodation businesses are not accessible for them, the hotel staff and other families do not have sufficient awareness of the subject. This situation draws attention to the necessity of providing more accessible holiday options for them.
The present research evaluates the effectiveness of CymaSense, a real-time 3D visualisation application developed by the authors, as a means of improving the communicative behaviours of autistic participants through the addition of a visual modality within therapeutic music sessions. Autism spectrum condition (ASC) is a lifelong neurodevelopmental disorder that can affect people in a number of ways, commonly through difficulties in communication. A multi-sensory approach within music sessions encourages people with ASC to engage more with the act of creating music, and with the therapists, increasing their level of communication and social interaction beyond the sessions.
This article presents a study evaluating the use of CymaSense within a series of therapeutic music sessions, and a follow-up series of semi-structured interviews. Eight adults with ASC participated in 12 sessions using a single case experimental design approach over a total period of 19 weeks. Using qualitative and quantitative data, the results show an increase in communicative behaviour, for both verbal and non-verbal participants, resulting from the use of CymaSense. Qualitative feedback from interviews provided insight into the factors that contribute to the successful use of the application, as well as aspects that could be improved.
The purpose of this chapter is to summarize the potential and current use of digital educational games as an intervention tool for autism spectrum disorder (ASD). It provides an overview of educational games, as well as the potential benefits of using educational games as an intervention tool. Second, this chapter reviews a selection of digital educational games designed for addressing targeted skill areas applicable to ASD, including social interaction and communication skills, facial and emotion recognition skills, and adaptive behavior. Supporting research related to educational games is reviewed. This chapter concludes with recommendations for the future of designing and evaluating educational games as an intervention tool for ASD.
Families living with neurodevelopmental disorders are unique, and while some families thrive despite the odds, other families struggle with the stresses and demands related to their loved one's caregiving needs. This chapter highlights key details and research about neurodevelopmental disorders, the available literature for understanding the multifaceted elements of family life, and how families are coping with their lived reality. The chapter also features common presenting problems clinicians may be involved with in facilitating change and supporting these families on their unique journeys. The chapter closes with specific practice recommendations and a call for systemic and longitudinal research that provides a clearer picture about which families thrive and which ones do not in the face of the challenges associated with living with neurodevelopmental disorders.
Families living with neurodevelopmental disorders are unique, and while some families thrive despite the odds, other families struggle with the stresses and demands related to their loved one's caregiving needs. This chapter highlights key details and research about neurodevelopmental disorders, the available literature for understanding the multifaceted elements of family life, and how families are coping with their lived reality. The chapter also features common presenting problems clinicians may be involved with in facilitating change and supporting these families on their unique journeys. The chapter closes with specific practice recommendations and a call for systemic and longitudinal research that provides a clearer picture about which families thrive and which ones do not in the face of the challenges associated with living with neurodevelopmental disorders.
Purpose:
Psychological mindedness (PM) can partly explain depressive symptoms in caregivers of autism spectrum disorder (ASD). This cross-sectional study examines PM in mediating the relationship between dysfunctional coping styles and depressive symptoms.
Design and methods:
One hundred fifty-five adult ASD caregivers completed the Malay version of Brief COPE, the Patient Health Questionnaire-9, and the Balanced Index of PM.
Findings:
Direct paths between dysfunctional coping style and depressive symptoms, between insight and depressive symptoms, and between dysfunctional coping style and all PM variables (insight and interest) were obtained. Multiple regression analyses revealed that insight, but not interest, significantly mediates the relationship between dysfunctional coping and depressive symptoms.
Practical implications:
PM can be enhanced via psychological interventions.
Examining caregiving issues from a multigenerational, family life cycle perspective, this volume deals with the broad spectrum of chronic illnesses that necessitate family caregiving throughout the lifespan and discusses responses to these challenges by both caregiving families and caregiving systems.
Part One addresses the caregiving paradigm and the relationship of family caregiving research to family life studies. Part Two examines conceptual aspects of caregiving, ranging from the expansion of the caregiving paradigm, caregiving processes and tasks, to the positive aspects of caregiving. Part Three emphasizes how family caregivers are affected by the connection (or lack of it) to macro-level systems.
Efficacious sampling methods are needed to recruit representative samples of under-represented research populations. The purpose of this article is to describe and evaluate a step-by-step methodological approach for sampling rare populations (e.g., Black female caregivers and noncaregivers). Using the Medicare Enrollment Database, the researchers conducted a reverse screening strategy and a case-control design to obtain a systematic random sample of the caregivers. After revision of the recruitment strategy and referral goals, the researchers recruited 202 caregivers and 206 noncaregivers. The proportion of elders with caregivers was 11.8 percent compared with a projected yield of 8 percent. Lessons were learned regarding efficiency in sampling methodology, including the importance of having the potential participants respond to an open-ended question regarding their understanding of the study participation, providing agencies with detailed specifications of requested lists, and not allowing the obtained list to age. This article provides a road map for sampling rare populations.
Children in poor families are at heightened risk for disabilities and chronic health-problems, and care for these children can impose substantial costs on families and public programs. Although the prevalence and costs of disabilities among poor children have important policy implications, they have been largely overlooked in research on poverty and welfare and on the costs of childhood disabilities. This article analyzes the prevalence of childhood disabilities and chronic illness among welfare recipient families in California and the probability families caring for these children experience higher out-of-pocket costs and material hardship than do other similar families.
This article broadens our knowledge about family caregiving across the life course by examining caregiving and employment effects experienced by women with children with special needs, using data from a survey conducted in 1998-1999. Almost one fifth of the mothers provide at least 20 hours a week of home health care to these children. More than half of the mothers in the labor force report an employment effect in the form of reducing their hours, and more than half of the mothers at home full-time report ceasing paid employment due to their children’s needs. Experiencing these effects was most strongly associated with the child’s health characteristics. The caregiving provided by mothers of children with special needs occurs at a formative stage of their lives and may be intense and of long duration. These mothers’ experiences should be included in the current research and theories about family caregiving across the life course.
This study explores the current market value of the care provided by unpaid family members and friends to ill and disabled adults. Using large, national data sets we estimate that the national economic value of informal caregiving was $196 billion in 1997. This figure dwarfs national spending for formal home health care ($32 billion) and nursing home care ($83 billion). Estimates for five states also are presented. This study broadens the issue of informal caregiving from the micro level, where individual caregivers attempt to cope with the stresses and responsibilities of caregiving, to the macro level of the health care system, which must find more effective ways to support family caregivers.
The aim of this study was to carry out a preliminary examination of a research instrument developed specifically to collect cost information for individuals with autistic spectrum disorder. There is very little cost information on children or adults with autism or autism-related disorder, and no study appears to have carried out a specific cost collection in this area. Although some global cost estimates can be made, little is known about the cost implications of parental burden. By using different techniques to collect indirect costs, the study outlines a functional methodology. Results from this small pilot study point to considerable economic burden for parents and give some indication of the associated costs of autistic spectrum disorder.
Introduction - Eva Kahana, David E Biegel, and May L Wykle PART ONE: PARADIGMS FOR CAREGIVING Developmental Challenges and Family Caregiving - Eva Kahana et al Bridging Concepts and Research Someone to Watch Over Me - Joan Aldous Family Responsibilities and Their Realization Across Family Lives Altruism Through the Life Course - Elizabeth Midlarsky Optimal Use of Formal and Informal Systems Over the Life Course - Eugene Litwak, Dorothy Jones Jessop, and Heather J Moulton PART TWO: ILLNESS AND LIFE STAGE: CHALLENGES FOR CAREGIVING Caregiving and Children - Joan M Patterson and Barbara J Leonard Caregivers of Persons Living With AIDS - Patricia Flatley Brennan and Shirley M Moore Predictors of Caregiver Burden Among Support Group Members of Persons With Chronic Mental Illness - David E Biegel, Li-yu Song and Venkatesan Chakravarthy Psychoeducational Programs - Catherine F Kane From Blaming to Caring The Home Care of a Patient With Cancer - Charles W Given and Barbara A Given The Midlife Crisis Caregiving Issues After a Heart Attack - Rosalie F Young and Eva Kahana Perspectives on Elderly Patients and Their Families PART THREE: THE INTERFACE BETWEEN FORMAL CARE PROVIDERS AND CAREGIVING FAMILIES Care at Home - Lucy Rose Fischer and Nancy N Eustis Family Caregivers and Home Care Workers The Caregiver as the Hidden Patient - Jack H Medalie Challenges for Medical Practice Caregiving Issues in Families of Children With Chronic Medical Conditions - Anne E Kazak and Dimitri A Christakis Relationships Between the Frail Elderly's Informal and Formal Helpers - Linda S Noelker and David M Bass Conclusion - Eva Kahana, David E Biegel, and May L Wykle
Many fad-like interventions have been attempted to treat people who suffer from autism, but most have had little or no tangible results. Therefore it is not surprising that insurance companies and government agencies are hesitant to extend benefits to young children who suffer from autism. However, in 1987, after 25 years of investigation comprising over 400 research studies conducted at University centers throughout the world by many researchers in the field of autism, the UCLA Young Autism Project, under the direction of O. Ivar Lovaas, Ph.D., was able to publish a long-term outcome study showing that 47 percent of the children treated were able to fully recover from autism. By all published accounts, these results were unprecedented. Subsequent research by independent laboratories around the world, is continuing to replicate these profound results and empower families to effectively treat their children. The difficulties of conducting such research are daunting. In order to be effective, the behavior therapy program must be intensive and must be delivered in early childhood. In effect, a family which chooses this therapy must organize their household into a 24-hour therapeutic environment for three or more years in order to remediate all of the symptoms of autism. To do so, they require 55 hours per week of extensive, specialized consultation and direct home-based treatment for 50 weeks per year. Such long-term research has been difficult to conduct and poorly funded. To be able to access such and expensive specialized treatment, many families have litigated with their governments, schools, and insurance companies for funding, and many have succeeded. However, these expensive actions have polarized the payors and the advocates. One argument against funding has been that the treatment is still experimental. And indeed, up until the late 1990's there was little consensus over interpretations of this large body of research.
With the recent reauthorizations of Public Law 94-142, there has been a greater push to identify and treat children with autism. As a result, autism is currently diagnosed and treated at younger ages, and nonmedical professionals who work with young children increasingly face the task of informing parents that their child has autism. To examine professionals' and parents' perceptions of giving and receiving a diagnosis of autism, 11 nonmedical professionals and 17 parents of children with autism participated in a series of interviews that were transcribed, unitized, and categorized using Lincoln and Guba's (1985) method of naturalistic inquiry. Based on the interview data, nine recommendations for practice were developed. The recommendations provide guidelines that nonmedical professionals can consult when faced with the task of sharing a diagnosis of autism.
National Survey of Families and Households 1987-88 (N = 73,017) data were used to generate population estimates of in-and out-of-household caregiving for persons of all ages. More than 1 in 7 U.S. adults reported caring for relatives or friends during the previous year, including more than 1 in 5 women aged 35-64. About one third of this care was provided to nonelderly persons. Multivariate analyses revealed that gender, age, marital status, education, ethnicity, education, and employment status helped predict the likelihood of caregiving.
This study examined the effects of caregiving for disabled children, spouses, parents, and other kin and nonkin on multiple positive and negative dimensions of psychological well-being and development using data from a population sample of employed, middle-aged men and women respondents in the Wisconsin Longitudinal Study 1992-1993 (n = 5,782). A life course role-identity theoretical framework was employed to hypothesize that contemporary social organization leads to conflicting demands across the role identities of employee and caregiver and that this conflict is an important factor in accounting for the negative effects of caregiving on well-being. Multivariate regression analyses confirmed these hypotheses and further revealed that if differences in work and family conflict between caregivers and noncaregivers were eliminated, the caregiving role would more often lead to positive effects on well-being.
Many claims concerning extent and consequences of litigation have been made, despite a lack of comprehensive and widely available data. It has been suggested that a rapidly increasing rate of litigation has caused problems in the recruitment and retention of obstetricians, and has also caused practitioners to practice ‘defensively’. This article discusses meaning and significance of defensiveness within obstetrics and midwifery and quantifies the incidence of certain examples of defensive practice. Based on large-scale postal surveys of obstetricians and midwives in Scotland and England, as well as follow-up interviews, it clarifies the significance of what has become known as defensive medicine in maternity care, notably in relation to caesarean sections. It then examines the role of clinical risk management, and the growth of protocols and guidelines in particular, in trying to limit litigation.
The basic theoretical framework for a home production activity model is developed here. This model provides a unified context in which to view production activities, especially within the home. A rationale for the widely held concept of utility is explained, thereby integrating social, psychological, and economic theory in a single theoretical construct. Such an inter disciplinary approach facilitates the understanding and explanation of the processes by which the family carries out its diverse functions.
Production activities are examined in an input‐output model and are differentiated accord ing to a classification of household, market, or home production. Output is defined in such a manner as to specifically expand the recently developed characteristic approach to consumer decision‐ making. This process allows us to view a broad range of family activities and place them on a continuum extending from production to consumption. Such a perspective pro vides a framework for analyzing home management and family development decisions of re source allocation with respect to human capital, material capital, time, consumption, and production.
Most children with special needs are more like normally developing children than they are different from them. They share the same zest for discovery, love for stories and music, and delight in dressing in adult clothes. They, too, need to learn to run and play, solve problems, have conversations with friends, and attend to their personal needs.
Finding an opening in a child care center can be a long, frustrating experience for families, particularly when employment is essential to cover basic needs. The problem of locating a satisfactory place increases tenfold when children have special needs. After learning that a prospective child has special needs, a child care center director will turn his or her attention to the impact the child's needs might have on center operations. The director fails to recall the commonalities these children share with other enrolled children. Multiple, abortive efforts to locate placement exacerbate family stress. In desperation, parents may drop the criteria they had believed to be important in selecting placement, feeling relieved and grateful that, at last, they can go to work.
To address this problem, we will first examine the characteristics of young children with special needs and indicate the prevalence of the problem. The traditional delivery models for early intervention and for child care will be reviewed, and barriers that inhibit provision for children with special needs in child care facilities will be noted. Some current models and practices that are effective will be reviewed. Finally, recommendations will be made for policy makers and providers of services.
Difficulties experienced when caring for an impaired elderly relative, including decisions to place this person in institutional care, are examined as a function of caregiver stress. Three annual interviews were conducted with 555 caregivers to parents or spouses with Alzheimer's Disease. All patients were initially cared for at home, but 192 were subsequently placed in institutional care and 146 died. Background-contextual factors and disease characteristics have only limited associations with institutionalization. Two secondary stressors--consequences of caregiving that do not directly involve care-related tasks--exert the most proximal impact upon placement: role captivity and economic strain. Role captivity is stable over time when in-home care continues, but institutionalization alleviates this sentiment. The odds of patient death increase substantially following institutionalization, even when health status is controlled. These results illustrate that in-home care may be beneficial for care-recipients, but increase role-related stress for the care provider.
An analysis of the current state of our knowledge of the effectiveness of early intervention for children at risk and for those with established disabilities was provided. A model focused on children's cognitive development was presented in which early intervention is placed firmly within a developmental framework. Both short- and long-term effects, the mechanisms through which early intervention exerts its influence, the relation between those mechanisms and the organization of existing service systems, current limits of programs, and prospects for future research were considered in this model.
This prospective study (n = 476) examined 3 types of caregiving transitions experienced by wives and daughters of older persons: entry, institutionalization, and bereavement. Daughters were more likely to enter the caregiving role than wives, but the impact of entering the role was more pronounced for wives. After becoming a caregiver, wives decreased in their participation in leisure activities, perceptions of quality of family relations, and marital satisfaction. Daughter caregivers were more likely than wives to place their care recipient in an institution, and they increased in social participation and decreased in subjective burden after placement. Roughly the same percentage of wife and daughter caregivers were bereaved during the study period, and for wives bereavement was accompanied by an increase in social involvement and personal growth. The results underscore the highly dynamic nature of the caregiving career and the importance of the kinship relationship between caregiver and care recipient in conditioning the effects of caregiving transitions.
This paper was commissioned by the committee on the Effectiveness of Early Education in Autism of the National Research Council (NRC). It provides a review of epidemiological studies of pervasive developmental disorders (PDD) which updates a previously published article (The epidemiology of autism: a review. Psychological Medicine 1999; 29: 769-786). The design, sample characteristics of 32 surveys published between 1966 and 2001 are described. Recent surveys suggest that the rate for all forms of PDDs are around 30/10,000 but more recent surveys suggest that the estimate might be as high as 60/10,000. The rate for Asperger disorder is not well established, and a conservative figure is 2.5/10,000. Childhood disintegrative disorder is extremely rare with a pooled estimate across studies of 0.2/10,000. A detailed discussion of the possible interpretations of trends over time in prevalence rates is provided. There is evidence that changes in case definition and improved awareness explain much of the upward trend of rates in recent decades. However, available epidemiological surveys do not provide an adequate test of the hypothesis of a changing incidence of PDDs.
Our understanding and treatment of children with autism have changed dramatically since Leo Kanner first formally documented the disorder in 1943.
With reference to the historical context, this paper reviews recent research addressing 4 major issues: early detection, intervention, education, and psychopharmacological management of children with autism and related (autistic) spectrum disorders (hereafter, “autism”).
We conclude from our review of the evidence that, in the absence of additional, more compelling data, the clinical usefulness of existing screening instruments remains questionable. However, the potential importance of such research is underscored by the clear benefits of early behavioural intervention: despite differences in orientation, outcomes for children with autism can be significantly enhanced with early intensive intervention. Although many questions remain (notably, What are the critical therapeutic components? For whom? For what domains of development? For what level of intensity and duration?), interventions shown to be effective are all carefully planned, engineered, monitored, and designed to target specific skill domains. Including children with autism in regular classes within the public school system poses several challenges, the most pressing of which is the large number of school personnel who need to be trained in evidence-based teaching and behavioural management practices. Finally, psychotropic drugs may help to reduce some symptoms, but they are neither curative nor a substitute for other forms of support and intervention.
In this paper, I explore how children's health influences the wages and work hours of their mother. Some children have illnesses that require expensive medicine or treatment, but demand little parental time. Others require extraordinary amounts of time; and still others require care at unpredictable times of the day. I construct a theoretical model of mother's labor supply that explicitly incorporates the financial and time costs associated with the presence of unhealthy children. The model predicts that children with time-intensive illnesses and those with unpredictable illnesses negatively influence mother's labor supply, whereas children with illnesses with a strong financial component have a positive effect on mother's labor supply. In order to empirically test this, I organize a focus group of doctors to categorize illnesses and disabilities by the type of resources they require. Using the 1997 PSID Child Development Supplement, I estimate the effects of these requirements on mother's decision to work and work hours. After controlling for the financial burden of the illness, single mothers work fewer hours if their child has a time-intensive illness and married mothers are less likely to work and work fewer hours if their child has a severe condition with an unpredictable time component. These findings are consistent with the theoretical model and highlight the need to decompose the effects of child health on mother's work status. Model specifications that aggregate across illnesses are incapable of disentangling these effects and may therefore underestimate the welfare costs of having a sick child in the family.
Intensive early intervention using behavior therapy is no longer experimental. Lovaas Institute for Early Intervention The consequences of caring: Effects of mothering child with special needs
- E V V Larsson
- M W Krauss
- B Anderson
- N Wells
Larsson, E. V. (2005). Intensive early intervention using behavior therapy is no longer experimental. Lovaas Institute for Early Intervention. Retreived May 25, 2005 from http://rsaffran.tripod.com/ ieibt.html Leiter, V., Krauss, M. W., Anderson, B., & Wells, N. (2004). The consequences of caring: Effects of mothering child with special needs. Journal of Family Issues, 25(3), 379–403.
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- Autism Society
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- Asa ]
- D Betts
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Art therapy and autism
- D Betts
One in four Americans know someone with autism
- Autism Today
Diagnosis and definitions
- Autism Victoria
Family resource management: Principles and applications
- R E Deacon
- F M Firebaugh
- R. E. Deacon
The high cost of autism. The State
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What is TEACCH? Available online at
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- S Tseng
Tseng, S. (2005). Severe medical conditions and the loss of health insurance coverage: Evidence from the Health and Retirement Study. Retrieved May 5, 2006 from: http://home.uchicago.edu/ ~htseng/hrstseng.pdf Tarkan, L. (2002). Autism therapy is called effective, but rare. New York Times. Retreived May 25, 2005 from http://www.spedalliance.com/autism.htm University of Michigan Health Systems [UMHS]. (2005). Autism and pervasive developmental dis-orders. Retrieved May 25, 2005 from http://www.med.umich.edu/1libr/yourchild/autism.htm Worthington, R. C. (1994). Models of linear and cyclical grief: Different approaches to different experiences. Clinical Pediatrics, 33(5), 297–300.
A user’s guide to the 2004 IDEA Reauthorization
- R Silverstein
Autism therapy is called effective, but rare
- L Tarkan
Caregiving in the United States: Research report
- S Payndya