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Disability in Children and Young Adults: The Unintended Consequences
Abstract
Approximately 5.6 million children in the United States have health conditions associated with moderate to severe limitations in self-care activities, and 1.5 million children are limited in their ability to walk, care for themselves, or participate in other activities.1- 4 Because there are differing definitions of disability and its severity, national estimates of prevalence vary. However, at least several million children in the United States will never be able to care for themselves. Historically, hospital or institutional care was the only option for these children, but as a result of sociopolitical and health care changes, pervasive nursing shortages, and scarce home care resources, most of the care of children with disabilities is now provided by their parents in their homes.5 Parents are shouldering more caregiving responsibilities that, because of technological advances and increased survival rates, have become increasingly complex and long-term.5,6 National initiatives have suggested that it is preferable for all children with disabilities to be cared for at home rather than in congregate care settings.7 For example, a goal of Healthy People 20108 is to reduce the number of persons 22 years and younger in congregate care settings from 24 300 to zero. Although these initiatives and recommendations may be well intentioned, they have contributed to serious and undesirable consequences for the child, the parents, the family, and health care systems.
... Despite the evidence of positive adaptations, families of children with developmental disabilities are at greater risk of a number of social and psychological stresses. These include mental and physical health problems (Murphy & Christian, 2007;Sloper & Beresford, 2006), marital problems and divorce (Glenn, 2007), poor housing (Joseph Rowntree Foundation, 2008), and increased expenses coupled with reduced income (because of constraints upon both partners working) (Sloper & Beresford, 2006). Australian studies (eg. ...
... A similar picture emerges from studies overseas (Murphy & Christian, 2007;Sloper & Beresford, 2006). Sloper & Beresford (2006) summarised the current circumstances of UK families with disabled children in the following terms: ...
This literature review was commissioned by the Office for Children and Portfolio Coordination, Department of Education and Early Childhood Development (DEECD), as part of its Early Childhood Intervention Services (ECIS) Reform Project (Stage 2): Developing Options and Next Steps. This Project aims to significantly enhance the efficiency, effectiveness and sustainability of Victoria’s ECIS system and improve outcomes for children with a disability or developmental delay and their families. The focus of the literature review is research on contemporary Australian and international evidence-based service delivery models for children with a disability, developmental delay or additional needs aged 0-8 years.
... Family members of CMC usually assume a significant responsibility for providing medical care for their children. These families often report physical, emotion, social, and financial burdens [17]. A report from the National Survey of Children with Special Health Care Needs found that a significant percentage of families provide greater than 21 hours per week on health care at home and approximately 11 hours per week on coordination of care. ...
Advances in neonatal, pediatric, and surgical care have led to the survival of a greater number of children with special health care needs who are cared for at home [1]. In the United States, approximately 1 in 25 children are considered children with medical complexity (CMC), and this population is expected to double in the next decade [2]. Due to the growing need for comprehensive care for these children, expanding and improving outpatient pediatric complex care services is necessary. This article reviews strategies and tools for identifying CMC and their degree of complexity, discusses different outpatient complex clinic models, identifies and evaluates challenges of delivering and managing complex care in the outpatient setting, describes current options for patient and family support, and discusses important transitions of care throughout these children’s lives.
Key points
•Outpatient pediatric care for children with medical complexity is a rapidly growing field.
•Early identification of children with medical complexity is key for improving their long-term outcomes.
•The extraordinary costs, resources, time, and coordination needed to appropriately care for medically complex children pose significant challenges to families and providers.
•The development of pediatric complex care clinics can provide options for overcoming some of the challenges facing this population.
... Alguns PNE são independentes e capazes de exercer suas atividades de vida diária, enquanto outros têm a necessidade da presença do cuidador para que possa exercê-las [8]. O cuidador principal, por passar um tempo elevado prestando obrigações às necessidades do indivíduo dependente, pode suportar de forma resignada um estresse cotidiano, levando como consequência, ao afastamento da sua própria família, dos amigos e uma restrição do seu convívio social [9,10]. ...
... Results from a review from the United States indicate that a single focused programme is unlikely to be as effective as holistic programmes which target multiple levels of intervention (Murphy & Christian, 2007). Meta-analytic and other studies (e.g., Protzko, Aronson & Blair, 2013;Eldevik et al., 2009;Reichow, 2012;Sullivan, Stone & Dawson, 2014;Skotarczak & Lee, 2015) have found evidence concerning the importance of early childhood nutrition, early intensive interventions such as the Early Intensive Behavioural Intervention programme, and interventions targeting family functioning and parenting skills. ...
Developing countries such as Indonesia face a range of environmental risk factors in relation to childhood disability. These include poverty, stigma, inadequate interaction with parents, violence and neglect, and limited access to basic services, particularly for those living outside urban areas. As such, this thesis aims to develop a best practice model that can be adapted by stakeholders working with young children with disabilities affected by these risk factors in rural Indonesia. Achieving this aim could contribute to the prevention of complications arising from early childhood disabilities and ensure that children with disabilities are well placed to participate in the broader community when they become adults. This thesis focused on West Timor, a rural and underdeveloped area in Indonesia facing significant challenges to reduce environmental risks.
Study one (chapter three) comprised a scoping review of the literature, investigating interventions with an aim to support the development of young children with disabilities in Indonesia. This review identified eight studies, all of which were limited in terms of methodological quality. A key finding of this review was the use of interventions in many studies that utilized local resources while addressing broad aspects of child development. In order to broaden the knowledge about effective interventions for young children with disabilities, study two (chapter 4) comprised a systematic review of the literature to identify interventions addressing environmental risks faced by young children with disabilities in developing countries more broadly. A total of 48 studies met the inclusion criteria. A synthesis of these studies indicated that the impact of environmental risk factors on young children with disabilities might be addressed by providing disability screening services, community-based interventions, targeted services and inclusive basic services. In addition, some key barriers and facilitators were identified.
Study three (chapter five) involved the qualitative examination of community perceptions about disability, environmental risk factors and available services. Responses
ii
from 23 parents and 15 local leaders including a midwife, headmaster, priest, and staff from government and non-government organisations were collected via semi-structured interviews and photovoice. The study highlighted the importance of local culture and religion in influencing the perceptions of disability and environmental risk factors in West Timor.
Using an Implementation Science approach to enhance transferability of findings, results from these first three studies were then integrated into a holistic model in study four (chapter six) for addressing the needs of young children with disabilities affected by environmental risk factors in developing countries. Fifty-five local leaders, including kindergarten teachers, Sunday school teachers and community health centre workers, participated in focus groups, while 35 key participants were interviewed to collect additional data. Forty-one activities and programmes suggested by the literature reviews and community opinion formed the basis of a best practice model. These activities were also supplied with implementation strategies to help stakeholders in adapting the activities to ones which could be applied within specific organisations. In total, this thesis provides an evidence-based model which can be used by practitioners and policymakers in developing countries when working with young children with disabilities.
... These findings have several important implications. First, the health and well-being of children with disabilities are linked to their caregivers' physical and mental health (Murphy and Christian 2007). Given the well-documented physical and mental health benefits of physical activity (Rhodes et al. 2017), the high rates of physical inactivity in parents of children with Down syndrome are alarming and are cause for concern both in the immediate (when care burden, stress and strain are the highest) and in the long term when the child ages (yet still is dependent on a caregiver), and the physical consequences of physical inactivity begin to be overtly manifested in the parent. ...
Background:
Emerging evidence suggests that parents of children with intellectual disabilities have poorer physical health than parents of typically developing children. However, it is unclear why. The purpose of this study was to examine differences in physical inactivity among a population-based sample of parents of children with and without Down syndrome.
Methods:
Data for this analysis come from 11 waves (2005-2016) of the National Health Interview Survey, a U.S. nationally representative survey. Minutes per week of leisure-time physical activity were ascertained by self-report with physical inactivity defined as reporting no leisure-time physical activity. Parents were classified as (1) parents of typically developing children, (2) parents of children with Down syndrome, (3) parents of children with a developmental disability that had a high functional impact (autism, cerebral palsy, vision impairment or hearing impairment), (4) parents of children with an intellectual or developmental disability, but who did not have Down syndrome or a high-impact developmental disabilities, and (5) parents of children with other special health care needs.
Results:
Parents of children with Down syndrome were more likely to be physically inactive compared with parents of typical children (odds ratio [OR]: 1.51 [95% confidence interval, CI: 1.08, 2.12]) and had the lowest likelihood among all subgroups of parents to children with developmental disabilities or special health care needs. Parents of children with Down syndrome also had a significantly greater likelihood of being physically inactive compared with parents of children with other special health care needs (OR: 1.56 [95% CI: 1.11, 2.19]), with developmental disabilities without high functional impact (OR: 1.58 [95% CI: 1.12, 2.24]) and with developmental disabilities with high functional impact (OR: 1.46 [95% CI: 1.03, 2.08]).
Conclusion:
Parents of children with Down syndrome are more likely to be physically inactive compared with parents of typically developing children and parents of children with other developmental disabilities or special health care needs. These findings suggest that parents of children with Down syndrome are a population in urgent need for interventions/programmes that promote physical activity, particularly as child well-being is linked to caregiver health.
... Algumas pessoas com necessidades especiais são independentes e capazes de exercer suas atividades de vida diária, enquanto outras têm a necessidade da presença do cuidador para que possam exercê-las [3]. A função do cuidador pode ser exercida por uma pessoa da família, ou ainda, por uma pessoa especializada na atividade de cuidar. ...
Pacientes com necessidades especiais (PNE) apresentam maior prevalência de cárie dentária, mais dentes não tratados e maior número de dentes perdidos, além de possuírem maior necessidade de tratamento periodontal, se comparadas à população em geral. Esse maior acometimento de doenças bucais pode estar relacionado à grande dificuldade que esta parcela da população encontra para realizar a higiene bucal, geralmente relacionada a um atraso motor e/ou algum déficit intelectual, necessitando muitas vezes do auxílio de um cuidador para realizá-la. Dessa forma, o objetivo desse trabalho é apresentar recursos e técnicas auxiliares para facilitar a higiene bucal do PNE. Dentre as tecnologias que podem auxiliar a higiene bucal estão os “abridores de boca”, muito utilizados quando a principal dificuldade encontrada no momento da realização da higiene bucal é a limitação da abertura de boca. Estes artefatos garantem segurança e comodidade, pois permitem manter a boca do PNE aberta e, com isso, ter acesso com a escova dental a todas as regiões da cavidade bucal, especialmente na região posterior. Outra dificuldade relatada pelos cuidadores é o uso do fio dental. O emprego de passadores de fio dental pré-fabricados, que podem ser encontrados no mercado de diversas formas e modelos, e o emprego da técnica de LOOP, indicado para PNE com menor habilidade motora, podem ser alternativas importantes para facilitar seu emprego. Desta forma, é importante destacar orientações e técnicas que facilitem e garantam a manutenção de uma higiene bucal adequada de PNE. Assim, é importante que o cirurgião-dentista tenha conhecimento sobre estas tecnologias e metodologias para orientar o PNE e seu cuidador a fim de promover uma adequada higiene bucal.
... When surveyed, 68 % of families of CMC reported financial hardship, and 46 % reported social hardship [17•]. These hardships might further drive total costs of care, as overwhelmed and depleted families struggle to meet the complex medical and functional needs of their CMC while also meeting competing family and personal responsibilities [18]. ...
Opinion statement
Children with medical complexity (CMC) represent less than 1 % of all US children, but account for more than 30 % of total pediatric healthcare costs. They are a rapidly growing population of children with the highest levels of medical fragility and intensive healthcare needs that drive them in and out of inpatient settings, particularly intensive care units, at astounding frequencies. CMC account for 34 % ($1.6 billion) of all Medicaid pediatric healthcare expenditures, 47 % of Medicaid’s total spending on pediatric hospital care, and for 71 % of the 30-day unplanned hospital readmissions. As major drivers of the national pediatric healthcare cost crisis, CMC urgently need high value systems of care that are responsive to their longitudinal needs. We encourage healthcare leaders to recognize the unique needs of CMC and their families and to provide intensive inpatient and outpatient comprehensive care in team-based models of goal-directed care. We emphasize the importance of safety, of rapid access to home and community based care, and of continuity of care across acute inpatient, post-acute, and outpatient settings. Resources of palliative care, post-acute care, telehealth, and strong parent-provider partnerships are needed to support value-driven systems. Emerging evidence suggests that comprehensive care for CMC and their families drives total healthcare expenditures down and offers an innovative approach to the provision of high value care for this growing population of children. Efforts to design, implement, and measure outcomes for innovative systems of care for CMC are needed.
... É importante, pelo contrário, que este amplo programa seja parte integrante de um paradigma que crie condições de mudanças no modelo de cuidados prestados, buscando, por exemplo, diminuir o isolamento social em que se encontram essas crianças e suas famílias e que possa oferecer os tratamentos mais pertinentes dentro de critérios de razoabilidade em cada caso concreto. Espera-se também que crie condições para amparar as intensas demandas dos familiares, sobrecarregados e desgastados, inclusive com significativas perdas materiais e financeiras 16,19,[34][35][36][37][38] . ...
OBJETIVOS: Conceituar cuidados paliativos e suas indicações em Pediatria; descrever as dificuldades para operacionalizar esses cuidados em domicílio para crianças dependentes de tecnologia; e analisar, sob uma perspectiva bioética, conflitos de natureza moral com esta modalidade assistencial. FONTES DOS DADOS: Revisão da literatura sobre cuidados paliativos para crianças dependentes de tecnologia e análise bioética dos conflitos de natureza moral. SÍNTESE DOS DADOS: Há vários obstáculos aos cuidados paliativos para crianças dependentes de tecnologia: dificuldades estruturais dos domicílios; isolamento social da criança e da família; atitude de descrença dos profissionais de saúde em relação a este tipo de cuidado; excessiva medicalização do domicílio; incerteza do prognóstico de terminalidade; sobrecarga física, emocional, social, material e financeira dos pais e dos demais familiares; mudanças na organização familiar para a convivência com estas crianças; relações paternalistas entre os profissionais da equipe e a família; redefinição dos papéis familiares, com reconfiguração do papel do cuidador. CONCLUSÕES: É fundamental a construção de uma agenda que tenha como premissa que o suporte tecnológico para crianças dependentes irá transformar o domicílio, e que essa transformação poderá fazer parte dos problemas a serem enfrentados pelos que nele convivem. É a partir deste pressuposto que ações em uma geografia distinta da hospitalar poderão ter um caráter de fato protetor à criança e a sua família, amparando-os nas suas variadas necessidades e construindo um modelo de cuidados que proponha intervenções nos distintos níveis de sobrecarga a estes atores vulnerados e desprotegidos.
... Families often face financial hardship related to extensive medical bills from lengthy hospitalizations as well as lost revenue related to the need to reduce employment outside of the home. 20 Some children with disabilities are eligible for Supplemental Security Income benefits, which may help meet the financial demands. 21 The financial implications of caring for children with special health care needs is further discussed in the American Academy of Pediatrics clinical report on parentprovider-community partnerships. ...
This Clinical Report was reaffirmed May 2017 and December 2022
Children and youth with complex medical issues, especially those with technology dependencies, experience frequent and often lengthy hospitalizations. Hospital discharges for these children can be a complicated process that requires a deliberate, multistep approach. In addition to successful discharges to home, it is essential that pediatric providers develop and implement an interdisciplinary and coordinated plan of care that addresses the child’s ongoing health care needs. The goal is to ensure that each child remains healthy, thrives, and obtains optimal medical home and developmental supports that promote ongoing care at home and minimize recurrent hospitalizations. This clinical report presents an approach to discharging the child with complex medical needs with technology dependencies from hospital to home and then continually addressing the needs of the child and family in the home environment.
... 63 Analogous to Russian nesting dolls, children with disabilities do not live in isolation but are embraced by their parents, who function within family units, which are, in turn, nested in communities and, ultimately, in local and national health care systems. 64 This social ecological framework of human development illustrates the critical importance of community-based systems response to the multifaceted and dynamic interdependencies among children with disabilities and their parents, families, communities, and health care systems. 65 Because the characteristics of each child and family, their shared history, and the social, economic, and cultural contexts within which they find themselves combine to create an infinite variety of circumstances, 66 care must be individualized and based on the tenets of mutual trust, respect, and familycentered decision-making. ...
This Clinical Report was retired May 2021
Children with disabilities and their families have multifaceted medical, developmental, educational, and habilitative needs that are best addressed through strong partnerships among parents, providers, and communities. However, traditional health care systems are designed to address acute rather than chronic conditions. Children with disabilities require high-quality medical homes that provide care coordination and transitional care, and their families require social and financial supports. Integrated community systems of care that promote participation of all children are needed. The purpose of this clinical report is to explore the challenges of developing effective community-based systems of care and to offer suggestions to pediatricians and policy-makers regarding the development of partnerships among children with disabilities, their families, and health care and other providers to maximize health and well-being of these children and their families.
... É importante, pelo contrário, que este amplo programa seja parte integrante de um paradigma que crie condições de mudanças no modelo de cuidados prestados, buscando, por exemplo, diminuir o isolamento social em que se encontram essas crianças e suas famílias e que possa oferecer os tratamentos mais pertinentes dentro de critérios de razoabilidade em cada caso concreto. Espera-se também que crie condições para amparar as intensas demandas dos familiares, sobrecarregados e desgastados, inclusive com significativas perdas materiais e financeiras 16,19,[34][35][36][37][38] . ...
To conceptualize palliative care and its indications in Pediatrics; to describe the difficulties involved in the delivery of such care at home for technology-dependent children; and to analyze, from a bioethical perspective, the moral dilemmas of palliative care assistance.
A literature review of palliative care for technology-dependent children and a bioethical analysis of moral dilemmas.
There are several obstacles to palliative care for technology-dependent children: structural difficulties at home; social isolation of both children and families; health professionals' sense of disbelief regarding this type of care; an excessive number of medical devices at home; uncertainty of a terminal prognosis; physical, emotional, social, material, and financial burden for parents and family; changes in family dynamics to adjust to these children; paternalistic relationship between professionals and family; changes in family roles, with shifts in the caregiver role.
It is essential to outline an agenda based on the premise that the medical apparatus for technology-dependent children will change the landscape of the home, and such a change might become a problem to be faced by all those living together. Based on this assumption, actions performed in a setting other than a health care facility might exert an actual protective effect on children and family, offering support in their several needs and developing a model of care delivery that includes interventions in the different levels of burden on these vulnerated and unprotected individuals.
Children with medical complexity account for 0.5–1% of US children. These youth experience a more complex transition of care, and for the purpose of the discussion, they are defined to include youth with rare or multiple chronic conditions and with significant neurocognitive and/or mental health impairments and/or technology dependence. There are distinctly protective factors at play in the transition of this population, including continuity of care by experienced and prepared caregivers, a high frequency of continuity of living in the same home setting, and sustainable and continuous insurance coverage through public disability programs. The unique challenges in this transition process include the need to adjust the existing pediatric treatment and care plan to accommodate for needs once the person reaches adult status, the common need for legal decision-making supports, a process for more in-depth preparation of adult inpatient and outpatient healthcare teams to care for less common and complex conditions of childhood, supports and equipment in home and community settings, prolonged caregiver needs for respite and adult life training, and specialized services leading to particular billing and coding concerns.
The availability of home care nurses is widely seen as a cause for delayed discharge from inpatient care. However, there is a paucity of data to support or refute this hypothesis. If availability is driven by labor market conditions, the relative availability should vary over time with changing labor market conditions. The purpose of this study was to determine whether the length of stay for pediatric patients bound for home care was correlated with the local unemployment rate. We found that a 1-percentage-point (or marginal) increase in the unemployment rate was associated with a 2.3-day decrease in the length of stay for chronic respiratory failure hospitalizations. This suggests that labor market conditions result in delayed discharge for chronic respiratory failure patients.
To describe and compare during an acute hospitalization the perceptions of parents, pediatric interns, and pediatric hospitalists regarding the long-term health-related quality of life (HRQoL) of children with severe disabilities when not hospitalized and to identify treatment goals.
Parents of children with severe disabilities aged 5 to 18 years, as well as the intern and hospitalist caring for the child during acute hospitalizations at a tertiary care center in Salt Lake City, Utah, participated in this study. All participants completed the KIDSCREEN-10 and an investigator-developed survey; a subset was interviewed to qualitatively ascertain perceptions of the child's HRQoL before the current acute illness. Responses were summarized with descriptive statistics and content analysis.
We enrolled 115 subjects. Overall, parents rated the HRQoL of their children significantly higher than did either group of physicians on both the KIDSCREEN-10 (37.4 ± 3.9 vs 29.6 ± 5.5, P < .001) and the investigator-developed survey (30.3 ± 5.9 vs 26.3 ± 5.5, P < .001). Parents described the HRQoL of their children more positively and broadly than did physicians. Parents and physicians also expressed different goals for treatment. Parents expressed optimism despite uncertainty regarding their child's future, whereas physicians anticipated increased medical complications and focused on caregiver burden.
Parents of children with severe disabilities rated their children's long-term HRQoL higher than physicians did. Such discrepancies may increase tensions and hinder shared decision-making efforts during acute hospitalizations. Explicit discussions between parents and physicians regarding the HRQoL of children with severe disabilities and treatment goals may facilitate care processes for everyone involved.
Chronic childhood illnesses have been demonstrated to negatively impact family functioning by introducing new or additive stress on all members of the family system, as well as by increasing financial burden and social isolation. Although these factors have not necessarily been shown to have a direct causal effect on increased rates of abuse in children with chronic illnesses, these children have nonetheless been demonstrated to be at greater risk for neglect and physical and sexual abuse. Children with chronic health care needs are increasingly likely to be referred for neuropsychological evaluation. Thorough assessment of maltreatment would be a valuable addition to all neuropsychological evaluations of children presenting with chronic health conditions.
In this study the authors address the quality of abstracts reviewed during a systematic review. Their objective was to describe the proportion of abstracts that could not be coded and to explore factors associated with that outcome. Using an exploratory design, a database of titles uploaded for analysis was examined for clarity, type and year of publication, and abstract format. Of the 1851 references examined, 481 (26%) were coded as unclear. The inter-rater reliability Kappa score was 0.777. These abstracts were more likely to have been published prior to 2002 and did not use a structured format. Abstracts are an important tool in the systematic review process. Structured abstracts can reduce the time and costs associated with conducting a systematic review.
The maltreatment of children with disabilities is a serious public health issue. Children with disabilities are 3 to 4 times more likely to be abused or neglected than are their typically developing peers. When maltreated, they are more likely to be seriously injured or harmed. As alarming as these numbers are, they likely underestimate the problem. Children with disabilities encounter all 4 types of abuse: physical, sexual, neglect, and emotional. Here, the author discusses risk factors associated with the maltreatment of children with disabilities, which, as expected, include both child and family factors.
Children with special healthcare needs benefit when there is close coordination of care for their chronic disease between specialists and primary care providers. The importance of coordination between primary and specialty care has become better recognized with the increased attention to a comprehensive 'medical home' model of care.
Care coordination requires close communication between primary care providers and specialty care centers. Primary care providers are in an ideal position to assist patients and families by providing care coordination, not only within the healthcare system, but also between the healthcare system and community services and schools. Coordination is best undertaken at the physician practice level, utilizing a team approach. Nonphysician staff provide added value in coordination of care for patients and families. Opportunities for reimbursement for this care are being developed.
Coordination of care for the many children with special healthcare needs can be realized using existing resources. Using cystic fibrosis as an example, implementation methods within pediatric primary care practices are presented and discussed.
Objective:
This self-directed learning module highlights the environmental factors that influence the participation of children and youth with disabilities in life situations, including activities of self-care, mobility, socialization, education, recreation, and community life. It is part of the study guide on pediatric rehabilitation in the Self-Directed Physiatric Education Program for practitioners and trainees in physical medicine and rehabilitation and pediatric medicine. This module emphasizes the participation of children with disabilities in adapted sports and reviews mobility devices to promote function, in the context of the International Classification of Functioning and in reference to the Americans with Disabilities Act. It provides the physiatrist with strategies to promote community participation, functional independence and healthcare transitions for children with disabilities as they approach adulthood. The goal of this article is to improve the learner's treatment strategies to maximize the participation of children and youth with disabilities in all settings, particularly schools and communities.
Hydrocephalus is a prototypical chronic condition that follows children into adulthood. The objectives of this study were to (1) review how the health care needs of young adults with hydrocephalus are not being met, (2) estimate the numbers of adults with childhood-onset hydrocephalus, (3) describe a novel program to provide care for young adults with hydrocephalus and other chronic pediatric conditions, and (4) propose national strategies to promote successful hydrocephalus transition care.
Adults with hydrocephalus need continuous access to expert surgical and medical providers. Existing care models fail to meet this need. The number of young adults who have hydrocephalus, are aged 18 to 35 and need treatment in the United States is predicted to exceed 40000 annually within the next 2 decades. We are developing integrated teams of pediatric and adult medical and surgical specialists to provide continuous, coordinated, comprehensive care for individuals with hydrocephalus in a pediatric setting. This setting will train our future physician workforce on optimal transition care. Coordinated national efforts are also needed.
Providers need to implement appropriate management and transition care for individuals with hydrocephalus. We must work at local and national levels to transform the care model, improve the quality of health care delivery, and improve outcomes for young adults with hydrocephalus.
Objective: This study examined the strength of the relationship between parents' perceptions of family- centered, professionally provided caregiving and their emotional well-being (feelings of distress and depres- sion). This was done in the context of other factors that might affect well-being (child behavior problems, coping strategies of parents, protective factors in the social environment, child factors related to disability, and family factors). Method: We asked 164 parents of children with nonprogressive neurodevelopmental disorders (primarily ce- rebral palsy, spina bifida, or hydrocephalus) to complete a series of instruments measuring the constructs of interest. Results: Structural equation modeling showed that more family-centered caregiving was a significant pre- dictor of parents' well-being. The most important predictors of well-being were child behavior problems and protective factors in the social environment. Conclusions: Services are most beneficial when they are delivered in a family-centered manner and address parent-identified issues such as the availability of social support, family functioning, and child behavior problems.
To assess whether parents' self-reported psychological distress was related to consequences of chronic health conditions in their children as reflected by three domains: functional limitations, reliance on compensatory mechanisms, and service use above routine care.
We used telephone survey data on children's health and parents' psychiatric symptoms from an inner-city community sample (n = 380) and a population-based national sample (n =398).
In the national sample, parents of children with functional limitations were more distressed than parents whose children experienced other types of condition consequences or none. In the inner-city sample, presence of a health condition was associated with greater parental distress, but there were no significant effects by consequence type.
Research needs to determine if parents of children with functional limitations represent a high-risk group and to identify the factors associated with their elevated distress.
This study examines 1) the way that children with chronic conditions are cared for at home and assisted by technology affects maternal employment and child care; 2) the social and clinical factors associated with the decision of a mother to quit employment to care for a child at home; and 3) the way in which care at home and the decision of a mother to quit a job affects maternal mental health.
The 6-month postdischarge status of 70 mothers of children assisted by technology (study group) was compared with the 6-month postdischarge status of 58 mothers of children (matched for age and gender) hospitalized for acute illnesses (comparison group). Between January and December 1993, we gathered information on sociodemographic status, employment status and changes in employment, severity of the child's condition, child care and nursing services at home, family support, and maternal mental health.
One third of mothers in the study group reported that they quit employment to take care of a child at home with only 37.1% remaining employed outside the home, compared with 69.0% of comparison group mothers. Single caretakers were 15 times more likely to quit employment compared with mothers in two-parent families. Availability of child care had an independent effect on a mother's decision to quit a job, whereas the severity of the child's condition did not. Child care hours were significantly lower in study group families and were provided mostly by relatives compared with day-care facilities and regular babysitters in comparison families. Family support was highest among employed mothers in both the study and the comparison groups and lowest in study group mothers who were neither employed currently nor before the child's illness or who had quit employment to care for the child. Family income was significantly lower in families with a child assisted by technology. Families in the study group had 20-fold higher uncompensated health care costs than did the comparison group. Mothers caring for a child assisted by technology reported less good mental health than did comparison group mothers, and employment seems to mediate this relationship.
Caring for a child assisted by technology seems to create barriers to maternal employment diminishing family resources at a time when financial needs actually may increase. Lack of family support and child care services increase the likelihood that mothers of children assisted by technology will stay out of the labor force. Remaining employed buffers the negative effects of care at home on maternal mental health. Health policies for children with chronic health problems should address issues of financial burdens and the labor force participation of their caretakers.
Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered.
Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks.
This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area.
Caring for any child involves considerable resources, but the demands for these resources are often increased when caring for a child with a disability. These demands have implications for the psychologic and physical health of the caregiver (CG). Although a number of recent trends in health care stress the importance of studying and promoting the health of CGs of children with disabilities, the literature in this area exhibits 2 major weaknesses, ie, most studies draw conclusions from relatively small, potentially biased, clinic-based samples and the majority of work has focused on the psychologic health of CGs, whereas little research has been undertaken to study their physical well-being. The goal of this study was to compare the physical and psychologic health of CGs of children with cerebral palsy (CP) with that of the general population of CGs.
Data on the physical and psychologic health of 468 primary CGs of children with CP, drawn from 18 of 19 publicly funded children's rehabilitation centers in Ontario, Canada, were collected with a self-completed questionnaire and a face-to-face interview. Identical items and scales had been administered previously to nationally representative samples of the Canadian population in 2 large-scale Canadian surveys, ie, the National Population Health Survey (NPHS) and the National Longitudinal Study of Children and Youth (NLSCY). Subsamples of those data, restricted to adult residents of the province of Ontario who were parents, allowed a comparison of our sample of CGs of children with CP with parent samples from both the NLSCY (n = 2414) and the NPHS (n = 5549).
Demographic variables included CG age, gender, education, income, and work-related variables. Psychologic health and support variables included social support, family functioning, frequency of contacts, distress, and emotional and cognitive problems. Physical health variables included the number and variety of chronic conditions, vision, hearing, and mobility problems, and experience of pain.
CGs of children with CP had lower incomes than did the general population of CGs (proportion with income over 60,000 dollars: CG: 40.9%; NLSCY: 51.4%), despite the absence of any important differences in education between the 2 samples. Results showed that CGs of children with CP were less likely to report working for pay (CG: 66%; NLSCY: 81.2%), less likely to be engaged in full-time work (CG: 67.5%; NLSCY: 73.2%), and more likely to list caring for their families as their main activity (CG: 37.2%; NLSCY: 28.4%). Measures of support showed no difference in reported social support (CG: mean score: 14.5; SD: 3.4; NLSCY: mean score: 14.3; SD: 2.7) or family functioning (CG: mean score: 8.6; SD: 5.6; NLSCY: mean score: 9.0; SD: 4.9) between the 2 samples, although the CG sample did report a statistically greater number of support contacts (CG: mean score: 4.5; SD: 0.7; NPHS: mean score: 4.2; SD: 0.9). Measures of psychologic health showed greater reported distress (CG: mean score: 4.7; SD: 4.4; NPHS: mean score: 2.2; SD: 2.7), chronicity of distress (CG: mean score: 5.5; SD: 1.4; NPHS: mean score: 5.2; SD: 1.1), emotional problems (CG: 25.3% indicating problems; NPHS: 13.7%), and cognitive problems (CG: 38.8%; NPHS: 14.3%) among CGs of children with CP. They also reported a greater likelihood of a variety of physical problems, including back problems (CG: 35.5% reporting the condition; SE: 2.2%; NLSCY: 12.2%; SE: 0.7%), migraine headaches (CG: 24.2%; SE: 2.0%; NLSCY: 11.2%; SE: 0.7%), stomach/intestinal ulcers (CG: 8.4%; SE: 1.3%; NLSCY: 1.7%; SE: 0.3%), asthma (CG: 15.8%; SE: 1.7%; NLSCY: 6.3%; SE: 0.5%), arthritis/rheumatism (CG: 17.3%; SE: 1.8%; NLSCY: 7.3%; SE: 0.5%), and experience of pain (CG: 28.8%; SE: 2.1%; NPHS: 11.0%; SE: 0.5), as well as a greater overall number of chronic physical conditions (CG: 24.1% reporting no chronic conditions; NLSCY: 55.2%).
Although many families cope well despite the added challenges of caring for a child with a disability, our findings suggest that the demands of their children's disabilities can explain differences in the health status of parents and that parents of children with CP are more likely to have a variety of physical and psychologic health problems. Many of these findings are consistent with a stress process model, in which stress from caregiving can directly or indirectly affect a variety of measures of health, although some of the findings (asthma and arthritis) seem to strain this hypothesis. Alternate interpretations of these findings include the possibility that parents who are in regular contact with the health care system may have more opportunities to discuss and receive attention for their own health concerns than do comparison adults or that the greater number of health issues reported by CGs is related to the nature of our study, perhaps leading these parents to focus on their health and well-being in more depth than is usually feasible in a population survey. CGs of children with CP also had lower incomes, despite the absence of any important differences in education. The findings are consistent with the idea that the financial burden of caring for a child with a disability results in part from a reduced availability of these parents to work for pay. IMPLICATIONS FOR SERVICE PROVIDERS: Physicians and other health care professionals should be aware of the important relationship between child disability and CG health. Family-centered policies and services that explicitly consider CG health are likely to benefit the well-being of both CGs and their families. Future work should address the extent to which the family-centeredness of services, as experienced by CGs, is associated with better health outcomes for parents and their families.
Objective:
Most children enjoy healthy childhoods with little need for specialized health care services. However, some children experience difficulties in early childhood and require access to and utilization of considerable health care resources over time. Although impaired motor function is the hallmark of the cerebral palsy (CP) syndromes, many children with this development disorder also experience sensory, communicative, and intellectual impairments and may have complex limitations in self-care functions. Although caregiving is a normal part of being the parent of a young child, this role takes on an entirely different significance when a child experiences functional limitations and possible long-term dependence. One of the main challenges for parents is to manage their child's chronic health problems effectively and juggle this role with the requirements of everyday living. Consequently, the task of caring for a child with complex disabilities at home might be somewhat daunting for caregivers. The provision of such care may prove detrimental to both the physical health and the psychological well-being of parents of children with chronic disabilities. It is not fully understood why some caregivers cope well and others do not. The approach of estimating the "independent" or "direct" effects of the care recipient's disability on the caregiver's health is of limited value because (1) single-factor changes are rare outside the context of constrained experimental situations; (2) assumptions of additive relationships and perfect measurements rarely hold; and (3) such approaches do not provide a complete perspective, because they fail to examine indirect pathways that occur between predictor variables and health outcomes. A more detailed analytical approach is needed to understand both direct and indirect effects simultaneously. The primary objective of the current study was to examine, within a single theory-based multidimensional model, the determinants of physical and psychological health of adult caregivers of children with CP.
Methods:
We developed a stress process model and applied structural equation modeling with data from a large cohort of caregivers of children with CP. This design allowed the examination of the direct and indirect relationships between a child's health, behavior and functional status, caregiver characteristics, social supports, and family functioning and the outcomes of caregivers' physical and psychological health. Families (n = 468) of children with CP were recruited from 19 regional children's rehabilitation centers that provide outpatient disability management and supports in Ontario, Canada. The current study drew on a population available to the investigators from a previous study, the Ontario Motor Growth study, which explored patterns of gross motor development in children with CP. Data on demographic variables and caregivers' physical and psychological health were assessed using standardized, self-completed parent questionnaires as well as a face-to-face home interview. Structural equation modeling was used to test specific hypotheses outlined in our conceptual model. This analytic approach involved a 2-step process. In the first step, observed variables that were hypothesized to measure the underlying constructs were tested using confirmatory factor analysis; this step led to the so-called measurement model. The second step tested hypotheses about relationships among the variables in the structural model. All of the hypothesized paths in the conceptual model were tested and included in the structural model. However, only paths that were significant were shown in the final results. The direct, indirect, and total effects of theoretical constructs on physical and psychological health were calculated using the structural model.
Results:
The most important predictors of caregivers' well-being were child behavior, caregiving demands, and family function. A higher level of behavior problems was associated with lower levels of both psychological (beta = -.22) and physical health (beta = -.18) of the caregivers, whereas fewer child behavior problems were associated with higher self-perception (beta = -.37) and a greater ability to manage stress (beta = -.18). Less caregiving demands were associated with better physical (beta = .23) and psychological (beta = .12) well-being of caregivers, respectively. Similarly, higher reported family functioning was associated with better psychological health (beta = .33) and physical health (beta = .33). Self-perception and stress management were significant direct predictors of caregivers' psychological health but did not directly influence their physical well-being. Caregivers' higher self-esteem and sense of mastery over the caregiving situation predicted better psychological health (beta = .23). The use of more stress management strategies was also associated with better psychological health of caregivers (beta = .11). Gross income (beta = .08) and social support (beta = .06) had indirect overall effects only on psychological health outcome, whereas self-perception (beta = .22), stress management (beta = .09), gross income (beta = .07), and social support (beta = .06) had indirect total effects only on physical health outcomes.
Conclusions:
The psychological and physical health of caregivers, who in this study were primarily mothers, was strongly influenced by child behavior and caregiving demands. Child behavior problems were an important predictor of caregiver psychological well-being, both directly and indirectly, through their effect on self-perception and family function. Caregiving demands contributed directly to both the psychological and the physical health of the caregivers. The practical day-to-day needs of the child created challenges for parents. The influence of social support provided by extended family, friends, and neighbors on health outcomes was secondary to that of the immediate family working closely together. Family function affected health directly and also mediated the effects of self-perception, social support, and stress management. In families of children with CP, strategies for optimizing caregiver physical and psychological health include supports for behavioral management and daily functional activities as well as stress management and self-efficacy techniques. These data support clinical pathways that require biopsychosocial frameworks that are family centered, not simply technical and short-term rehabilitation interventions that are focused primarily on the child. In terms of prevention, providing parents with cognitive and behavioral strategies to manage their child's behaviors may have the potential to change caregiver health outcomes. This model also needs to be examined with caregivers of children with other disabilities.
The influence of disabilities on placement outcomes was examined for 277 children who were removed from their biological parents due to substantiated maltreatment. Results indicated that children with a disability were less likely to reunify and more likely to reside in nonkin foster care two years later than typical children. Children with cognitive, emotional /behavioral, and physical disabilities were over four times more likely to be permanently living in nonkin foster care than to be reunified.
This study describes mothers' reports of the effects of pediatric chronic illness on sibling and maternal activities. Mothers of children with cardiac (n = 57) and neurologic (n = 43) conditions were interviewed in hospital clinics of Manila, Philippines. Results showed that pediatric chronic illness in the family significantly increased siblings' household activities (which included both housekeeping and well-sibling caretaking) and decreased school and social activities. Maternal participation in four areas--caregiving to well children, housekeeping, job, and social activities also decreased significantly. Girls, more than boys, were delegated chores related to caregiving of well siblings and housekeeping. Spouses and grandparents also helped with caregiving of well children.
A survey was mailed to caregivers of children with disabilities to ascertain how they were managing caregiving. Caregivers reporting they were managing "OK" were compared to those who reported they needed more help or could not manage much longer ("not OK"). Results showed the not OK group of caregivers had children who were more severely impaired and functionally dependent. Their mothers were in poorer physical and mental health, had greater demands placed on their time and finances, and received less emotional support from friends and family. Special programs provided some assistance but not enough to meet their needs.
Flying in the face of national community care policies, families of young children with severe disabilities continue to seek out-of-home placement The present paper explores the factors which influence families to care for their children at home or to place them out-of-home. Data for the present study were derived from a qualitative in-depth study of the everyday family life experiences of 167 families of young children with a disability and high support needs. One hundred and twenty-five (75%) of these families definitely did not want to place their child, 32 (19%) were undecided, and 10 (6%) were actively seeking or had already sought placement. Coded interview data were subjected to exploratory factor analysis to reveal eight factors influencing everyday family life. An analysis of variance (ANOVA) revealed significant differences between the three groups of families on three out of the eight factors. The families' views about placing their child were compared across the three groups using text analysis techniques. Without exception, the primary desire of all families was to care for their child at home. However, when placement was considered a possibility, even if remote, the most frequently reported reasons were family 'survival' and mitigating circumstances. The finding that one-quarter of the families had already sought or were considering placement for children in this young age range is provocative. The implications of the findings for policy and practice are discussed.
To determine factors associated with recurrent hospitalization in children with chronic illnesses in the Barwon Region.
Patients with four or more admissions to the Geelong Hospital children's ward over a 12-month period were identified. Their records were reviewed and the opinions of involved staff (medical, nursing, psychiatry, psychology, and social work) were sought. Multidisciplinary discussions were held to identify factors precipitating or maintaining the need for hospitalization. The numbers, illnesses and profiles of those admitted recurrently were compared with the data from the Barwon Paediatric Consultation Profile from the same period, and with those patients seen by the local counselling service for young people with chronic illnesses.
Twenty-seven children had four or more admissions over the 12 months; these represent 0.05% of the child population regionally, or 2% of those with chronic illness. They account for 8.7% of hospital admissions and 16% of inpatient days. Two-thirds (18/27) had major psychosocial issues largely responsible for their admissions. A checklist was formulated of important medical, family, social, psychological, developmental, and institutional considerations. The most frequently identified psychosocial issues were medical dependency, psychological or medical problems affecting other family members, family and medical disparity regarding the treatment agenda, the lack of more intensive community supports, and medical controversy regarding best management.
Ongoing medicalization and medical dependency, driven both by staff and families, can perpetuate recurrent hospitalization. Further awareness and training in these issues and development of community resources will be necessary if this process is to be changed.
Home care has been described as the fastest growing component of personal health care spending, and pediatric home care as the fastest growing segment of the home care field. Because of the continued progress in pediatric medicine and advances in technology, a growing population of children with complex chronic and terminal conditions can be cared for at home. A growing subspecialty in pediatric health care is delivering services for infants and children with HIV infection or AIDS and those born to mothers addicted to drugs or alcohol. This article describes the reimbursement and cost-benefit issues surrounding pediatric home health care, with particular attention to the HIV/AIDS pediatric population.
To assess the prevalence of abuse and neglect among a population of children identified as a function of an existing disability, relate specific types of disabilities to specific types of abuse, and to determine the effect of abuse and neglect on academic achievement and attendance rates for children with and without disabilities.
An electronic merger of school records with Central Registry, Foster Care Review Board, and police databases was followed by a detailed record review of the circumstances of maltreatment.
Analyses of the circumstances of maltreatment and the presence of disabilities established a 9% prevalence rate of maltreatment for nondisabled children and a 31% prevalence rate for the disabled children. Thus, the study established a significant association between the presence of an educationally relevant disability and maltreatment.
Children with disabilities are 3.4 times more likely to be maltreated than nondisabled peers. School professionals need to be cognizant of the high base rate of maltreatment among the children they serve. Disability status needs to be considered in national incidence studies of maltreatment.
Low back pain (LBP) in occupational settings has been studied extensively. There are fewer studies on LBP in domestic settings, especially in an informal caregiving setting.
To compare the prevalence of LBP in adult female primary caregivers of children with physical disabilities who need assistance with transfers (eg, moving from a bed to a wheelchair) with the prevalence of LBP in adult female primary caregivers of children with nondisabling medical illnesses and to evaluate the factors associated with LBP.
A 15-minute, self-administered, cross-sectional survey.
University-based clinics. Subjects Ninety consecutive adult female caregivers of children presenting to a pediatric physical medicine and rehabilitation clinic and 23 consecutive adult female caregivers of children presenting to a pediatric endocrine clinic were studied. General exclusionary criteria included the following: male sex, a history of back surgery or fracture, the caregiver was younger than 18 years old at the time of the completion of the questionnaire, or the caregiver was caring for any child younger than 2 years old. Caregivers visiting the pediatric endocrine clinic were excluded if they were caring for 1 or more children needing assistance with transfers.
The dependent variable was the presence of LBP. The independent variables were mood, work status, amount of lifting at work, physical functioning of the child, demographic variables of the caregiver, and demographic variables of the child.
The prevalence of having LBP (71.1%) in the physical medicine and rehabilitation group is higher than the prevalence (43.5%) in the endocrine clinic group (odds ratio, 3.2; 95% confidence interval, 1.25-8.21). The prevalence of having LBP (80.3%) when the child required physical assistance with transfers was significantly higher than the prevalence (40.5%) when the child did not require physical assistance with transfers (odds ratio, 2.56; 95% confidence interval, 2.56-14.0). Forward multiple logistic regression showed that the factors related to LBP in the caregiver were the transferability of the child, mood of the caregiver, and a history of LBP in the caregiver.
The prevalence of LBP is higher in caregivers of children needing assistance with transfers. This increased prevalence is associated with the transferability of the child and mood of the caregiver. Results of this study suggest that physical and psychological factors both contribute to the presence of nonoccupational LBP.
Advances in medical technology and nursing care have enabled children who rely on long-term medical and technical support to reunite with their families and community. The impact of discharging these children into the community involves a number of unprecedented social implications that warrant policy consideration. To begin with, an effort must be made to understand the phenomenon of caring for technology-dependent children living at home.
The aim of this paper is to provide a comprehensive literature review on caring for technology-dependent children living at home.
The review was conducted via keyword searches using various electronic databases. These included CINAHL, MEDLINE, Social Science Index, Sociological Abstracts, Australian Family and Society Abstracts, and the Australian Bureau of Statistics. The articles and books found were examined for commonality and difference, significant themes were extracted, and the strength of the research methods and subsequent evidence were critiqued.
In this paper, themes relating to home care for technology-dependent children and their families are elucidated and summarized. These are: chronic illness and children; the impact of paediatric home care on children; the uniqueness of technology-dependent children and their families; and parents' experience of paediatric home care.
Contentious issues, relevant to the social life of these children and their families, are raised and are discussed with the intention of extending awareness and provoking further debate among key stakeholders. These issues include: the changed meaning of home; family dynamics; social isolation; saving costs for whom?; shifts in responsibility; and parent-professional relationships.
More research is needed in the arena of paediatric home care, to facilitate relevant policy formation and implementation.
To provide a baseline measure of the proportion of US children who meet the Maternal and Child Health Bureau's core outcomes for children with special health care needs (CSHCN). Those core outcomes include the following: 1) families of CSHCN will partner in decision making and will be satisfied with the services that they receive; 2) CSHCN will receive coordinated, ongoing comprehensive care within a medical home; 3) families of CSHCN will have adequate private and/or public insurance to pay for the services that they need; 4) children will be screened early and continuously for special health care needs; 5) community-based service systems will be organized so that families can use them easily; and 6) youths with special health care needs will receive the services necessary to make transitions to adult life, including adult health care, work, and independence.
A national household survey was conducted using telephone interviews. We analyzed data on 38,866 CSHCN included in the 2001 National Survey of CSHCN and 13,579 children included in the 2001 National Health Interview Survey. We assessed the proportion of US children who met each of the 6 core outcomes for CSHCN using data from 2 surveys.
Success rates ranged from 6% (the core outcome on successful transition to adulthood) to 74% (the core outcome on organization of the service system). For 5 of the 6 core outcomes, success rates exceeded 50%.
Our results indicate that, for the most part, the United States is well positioned to meet the 6 core outcomes. However, much more work lies ahead before success can be claimed. This is especially true for the core outcome on transition to adulthood, for which only 6% of children in the target population are now meeting this goal.
To examine health care utilization and expenditure patterns for children with disabilities.
Secondary data analysis was conducted of the 1999 and 2000 editions of the Medical Expenditure Panel Survey (MEPS), a nationally representative survey conducted in 5 rounds by household interview. Two years of MEPS data were combined in this analysis to improve the precision of estimates. Disability was defined by the presence of a limitation in age-appropriate social role activities, such as school or play, or receipt of specialized services through the early intervention or special education programs. The survey sample included 13,792 children younger than 18 years. The overall response rate was 65.5%.
Our findings demonstrate that the 7.3% of US children with disabilities used many more services than their counterparts without disabilities in 1999-2000. The largest differences in utilization were for hospital days (464 vs 55 days per 1000), nonphysician professional visits (3.0 vs 0.6), and home health provider days (3.8 vs 0.04). As a result of their greater use, children with disabilities also had much higher health care expenditures (2669 dollars vs 676 dollars) and higher out-of-pocket expenditures (297 dollars vs 189 dollars). We also found that the distributions of total and out-of-pocket expenses were highly skewed, with a small fraction of the disabled population accounting for a large proportion of expenditures: the upper decile accounted for 65% of total health care expenses and 85% of all out-of-pocket expenses for the population with disabilities. Health insurance was found to convey significant protection against financially burdensome expenses. However, even after controlling for insurance status, low-income families experienced greater financial burdens than higher income families.
The skewed distribution of out-of-pocket expenses found in this and earlier studies indicates that the financial burden of childhood disability continues to be shared unevenly by families. Low-income families are especially vulnerable to burdensome out-of-pocket expenses. Additional efforts are needed to protect these high-risk families.
This Clinical Report was retired June 2009
One goal of Healthy People 2010 is to reduce the number of people with disabilities in congregate care facilities, consistent with permanency-planning principles, to 0 by 2010 for persons aged 21 years and under (objective 6–7). Congregate care, in this regard, is defined as any setting in which 4 or more persons with disabilities reside, regardless of whether the residence is located in the community, such as a school, group home, nursing facility, or institution. Although this particular public health objective may reflect an unfamiliar concept for some pediatricians, the American Academy of Pediatrics supports the goals and objectives of Healthy People 2010 as well as the medical home and the provision of community-based, culturally effective, coordinated, and comprehensive care for children with special health care needs and their families. To advise families caring for children with special health care needs effectively, the pediatrician should be familiar with the principles of permanency planning and well informed of local family-support services. The pediatrician should also work with the family to identify the range of long-term supports and services available for their child. These supports may include respite for biological families as well as various additional parenting models such as shared parenting, foster care, alternate parents, and adoption. Although family-based supports are preferable, families may consider other out-of-home placements including group homes, placement in a nursing facility, or other forms of institutional care when sufficient family-based services are not available. Once all the options are understood, issues regarding quality of care can be individualized and judged by the parent or guardian, in close collaboration with the pediatrician and other professionals with expertise in permanency planning and long-term supports and services.
The purpose of this clinical report is to educate physicians on the philosophy of providing a permanent family environment (permanency planning) for all children, including those with special health care needs, and the importance of adequate and accessible community services to support and maintain the well-being of all family members.
This paper reports a study exploring parents' experiences of caring for a child who is dependent on medical technology, and in particular of performing clinical procedures on their own children.
A group of children with a continuing need for the support of medical technology have emerged in community settings as a result of medical advances and government policies. Caring for these children has a significant social and emotional impact on parents, because of their specialized and intensive care needs. Obtaining appropriate and coordinated home support services is problematic.
Grounded theory techniques were used, and in-depth interviews were conducted with the parents of 24 children.
Parents' accounts revealed that their constructions of parenting were shaped by the nature of their role in caring for their child and by the transformation of their homes by medical equipment and personnel. They described themselves as having a role that had both parenting and nursing dimensions. Parents managed this tension and defined their role and relationship to their child to be primarily one of parenting by differentiating parental care-giving and its underpinning knowledge from that of professionals, particularly nurses.
Parenting a technology-dependent child alters the meaning of parenting. Professionals need to recognize that providing care has a substantial emotional dimension for parents, and that they need opportunities to discuss their feelings about caregiving and what it means for their parenting identity and their relationship with their child. A key professional nursing role will be giving emotional support and supporting parents' coping strategies. Parents' perceptions of nurses raise questions about whether nurses' caregiving is individualized to the needs of the child and family, and whether parental expertise is recognized.
During the past 2 decades, family-centered care has evolved as the standard of care for children with special health care needs. A major principle of family-centered care is a strong partnership between the family and provider, working together to address issues and barriers to accessing comprehensive care and related services. The federal Maternal and Child Health Bureau defines a positive family-provider partnership as a core program outcome. Our objective was to assess the extent to which families of children with special health care needs feel as though they are treated as partners in decision-making by their doctors.
We analyzed the 2001 National Survey of Children With Special Health Care Needs, a nationally representative telephone survey of caretakers for 38,866 children with special health care needs. Bivariate and multivariate statistical methods were used to assess the frequency of meeting the partnership core outcome, as well as the demographic and socioeconomic predictors of meeting core outcome. We also examined the effect of partnership on indicators of access and well-being for children with special health care needs.
Among children with special health care needs, 85.8% of families reported usually or always feeling like a partner in their child's care. However, living in poverty, minority racial and ethnic status, absence of health insurance, and depressed functional ability placed children with special health care needs and their families at elevated risk of being without a sense of partnership. We found that sense of partnership was associated with improved outcomes across a number of important health care measures, including missed school days, access to specialty care, satisfaction with care, and unmet needs for child and family services.
Results of the survey demonstrated that whereas most families of children with special health care needs feel they are partners in the care of their child, further work is needed, particularly for poor, uninsured, and minority children, as well as those with functional limitations. The survey results also demonstrate the importance of partnership; children whose care met the partnership core outcome experienced improved access to care and well-being.
Our goal was to evaluate the impact of having a medical home on the outpatient medical costs of children and youth with special health care needs.
Data from 2 sources were matched at the individual level: (1) the 2002 Iowa Consumer Assessment of Health Plans Study survey of Medicaid enrollees and (2) Iowa Medicaid administrative claims, encounter, and enrollment files.
The subjects were 1140 children aged 6 months to 12 years for whom both sources of data were available.
Outcomes measures included medical homeness, as developed by a scale of items in the Consumer Assessment of Health Plans Study survey, and outpatient costs, as determined from Medicaid administrative data.
From the regression models, we found that (1) for all Medicaid-enrolled children, outpatient costs were significantly higher for female children and children and youth with special health care needs, (2) for children and youth without special health care needs, costs were significantly higher for female children, those with a personal doctor or nurse, and those with more of a medical home, and (3) for children and youth with special health care needs, costs were significantly higher for those in a lower health state, for those in health maintenance organization 2, and for older children.
Although the degree of medical homeness was not related to outpatient costs for children and youth with special health care needs, medical homeness may affect inpatient costs more than outpatient costs for children and youth with special health care needs and should be investigated further.
There are an estimated 5.9 million children with severe disabilities in the USA, and most of them are cared for at home by their parents and families. Indirect evidence suggests that poor caregiver health may contribute to recurrent hospitalizations and out-of-home placements for children with chronic conditions and disabilities. Greater knowledge of caregiver health-related needs would allow for the improvement of existing services and the development of new strategies to sustain caregivers in their vital roles. This study explores caregiver perspectives of the health implications of long-term informal caregiving for children with disabilities.
Forty parents/caregivers of children with disabilities residing in urban, suburban and rural regions of Utah completed questionnaires and participated in focus groups that explored their feelings regarding their current physical and emotional health and the factors that they viewed as either impairing or promoting their health. The sessions were audiotaped and transcribed. Summary statistics were generated for the questionnaire responses. Focus group content was analysed according to emerging themes and patterns in clusters of information.
The caregiving experience was captured by five themes: (i) stress of caregiving; (ii) negative impact on caregiver health; (iii) sharing the burden; (iv) worry about the future; and (v) caregiver coping strategies. Forty-one per cent of the caregivers reported that their health had worsened over the past year, and attributed these changes to a lack of time, a lack of control and decreased psychosocial energy.
Caregivers of children with disabilities describe negative physical, emotional and functional health consequences of long-term, informal caregiving. They have important insights regarding those aspects of caregiving that have positive and negative influences on their health. Interventions that address these issues may have the potential to positively impact caregiver health.
Widespread efforts are being made to increase awareness and provide education to pediatricians regarding risk factors of child abuse and neglect. The purpose of this clinical report is to ensure that children with disabilities are recognized as a population that is also at risk of maltreatment. Some conditions related to a disability can be confused with maltreatment. The need for early recognition and intervention of child abuse and neglect in this population, as well as the ways that a medical home can facilitate the prevention and early detection of child maltreatment, are the subject of this report.