The impact of childhood chronic neurological diseases on Greek families

BACKGROUND: Although the impact of childhood chronic neurological diseases (CND) on patients' psychological well-being has been increasingly addressed, little attention has been given to the influence of these conditions on family members and family functioning. The purpose of the present study was to investigate the family characteristics of Greek children suffering from CND. METHODS: A total of 52 parents of children with CND were studied by using the Family Environmental Scale (FES), the Family Burden Scale, the General Health Questionnaire (GHQ-28) and a questionnaire on the knowledge of their children's illness, their coping strategies and their satisfaction with our services. During the same period, 30 parents of hospitalized children for common paediatric illnesses completed the FES. In both groups social and demographic features were registered. Appropriate statistical processes were applied to compare the above-mentioned family groups and to study the differences between the families of children with epilepsy (n=37) and the families of children with other CND (n=15). RESULTS: Parents of children with CND discuss their problems less freely, talk less openly around home, score highly on FES subscale of Conflict and, pay more attention to ethical and religious issues and values. Furthermore, the families of children with other CND were more burdened regarding the financial state and the health status of other family members in comparison with families of children with epilepsy. In addition, families of children with epilepsy were more involved in social and recreational activities, appeared to be more knowledgeable on the availability of help in critical conditions and were more satisfied with rendered medical services, in comparison with families of children with other CND. CONCLUSION: These preliminary findings provide important information concerning the special characteristics of Greek families of children suffering from CND, which may prove especially helpful in organizing specific support services.     

The continuation of home care to severely impaired children and aged in Israel: family attitudes.

There are a growing number of children and aged with severe chronic health problems in the community. Mothers become the prime caregivers to these children and aging spouses or middle-aged offspring the caregivers to these aged. The services offered to these families are determined by economic and social conditions, as well as changing fashions, rather than knowledge of the patients' and caregivers' needs. The purpose of this study was to assess the impact of homecare upon families caring for children versus those caring for aged and these families' attitudes toward continuation of home care versus institutionalization. The families included in the study were drawn randomly from the case load of community nurses in central Israel. In-depth interviews were conducted with 92 families of severely impaired children and 181 families of severely impaired adults and aged in their homes. While the majority of both populations carry a heavy burden of caregiving over years, they also receive gratification from their ability to care for their patient at home. There is little difference between those caring for children and those caring for adults in their attitudes toward continuation of home care. Mental rather than physical impairment, a deteriorating illness trajectory; depression, aggression and tension of the caregiver, the absence of sufficient social support and home care services correspond with negative feelings toward continued home care. The perceived impact of caregiving responsibilities upon the caregivers' lives, the ability to tolerate and manage symptoms and above all the quality of the patient-caregiver relationship influenced the caregivers' attitudes toward institutionalization in both populations. Family attitude toward continued homecare and institutionalization of children and adults are compared and the needs for services discussed.     

Unmet needs for health information: a literature review

This paper explores the recent literature on unmet needs for health information, giving an overview of some of the research that has been carried out since Kempson's review and study in 1987. Many of the studies looking at health information needs have been approached from a narrow focus of individual information needs for specific services, with limited research into the views of the general public. The greatest demand for health information appears to be in the area of specific diseases and medical conditions with limited demand for information on the availability and quality of care. These findings may be a reflection of the narrow focus of much previous research and/or the limited availability of health information on access and quality. The paper argues for the need to look widely at the health information needs of households and families at all stages of health and illness, taking into account the interrelationship of needs and the social context in which such needs are, or are not perceived.     

Rural/Urban Differences in Barriers to and Burden of Care for Children With Special Health Care Needs

PURPOSE: To examine the barriers and difficulties experienced by rural families of children with special health care needs (CSHCN) in caring for their children. METHODS: The National Survey of Children with Special Health Care Needs was used to examine rural-urban differences in types of providers used, reasons CSHCN had unmet health care needs, insurance and financial difficulties encountered, and the family burden of providing the child's medical care. We present both unadjusted and adjusted results to allow consideration of the causes of rural-urban differences. FINDINGS: Rural CSHCN are less likely to be seen by a pediatrician than urban children. They are more likely to have unmet health care needs due to transportation difficulties or because care was not available in the area; there were minimal other differences in barriers to care. Families of rural CSHCN are more likely to report financial difficulties associated with their children's medical needs and more likely to provide care at home for their children. CONCLUSIONS: Examining results from both unadjusted and adjusted odds ratios shows that the burden of care for families of rural CSHCN stems both from socioeconomic differences and health system differences. Policies aimed at achieving equity for rural children will require focusing on both individual factors and the health care infrastructure, including increasing insurance coverage to lessen financial difficulties and addressing the availability of providers in rural areas.     

Supporting family engagement with child and adolescent mental health services: A scoping review

A key challenge facing the mental health field is connecting children and families to services when symptoms first appear. Multiple barriers inhibit timely access to treatment, and interventions to resolve barriers to care are not common among health and social care organisations. To address this research‐to‐practice gap this study undertook a scoping review of the empirical literature aimed at identifying key factors in the social ecology of families which influence family engagement with child and adolescent mental health services, then identifying and describing models of intervention designed to help facilitate access to care. Forty studies published between 1 January 2000 and 28 February 2019 were reviewed. Key factors associated with child and adolescent mental health service engagement included family attitudes towards mental illness and help seeking, the flexibility and availability of needed services, community attitudes and stigma surrounding mental illness and mental health treatment, and the degree of coordination and integration across systems of health and social care. Models of intervention to facilitate engagement with mental health services included family outreach, telephone and digital health strategies, and integrated care approaches. Empirical support is strongest for family outreach and integrated care, although telephone and digital health strategies are underexplored with children and families and a potentially promising avenue for future research. To support family engagement with child and adolescent mental health services health and social care organisations should be prepared to identify barriers in their local practice settings and integrate efficacious engagement approaches into their continuum of available services.     

Developing services to support parents caring for a technology-dependent child at home

BACKGROUND: A group of children with complex health care needs have emerged as a result of medical advances and government policies emphasizing the community as the arena for care. Some of these children remain dependent on the medical technology that enabled them to survive and require care of a complex and intensive nature to be carried out by their parents at home. AIMS: To explore the experiences of families caring at home for a technology-dependent child; to examine their needs for practical and other support; and to examine how far services are currently meeting these needs. Methods In-depth interviews were conducted with the parents of 24 technology-dependent children and with 44 health, social care and other professionals. RESULTS: Services in the community were not sufficiently developed to support this group of families. Major problems were identified in the purchasing and provision of both short-term care/home support services and specialist equipment/therapies in the community. Service provision could be poorly planned and co-ordinated at an operational level and few families had a designated key worker. Parents felt that professionals did not always recognize either the emotional costs entailed in providing care of this nature or their expertise in caregiving. Information-giving to parents was often described as poor and participants reported that hospital professionals failed to negotiate the transfer of caregiving responsibility to parents. CONCLUSIONS: Services need to work in partnership with families and with each other at both strategic and operational levels, to develop integrated and co-ordinated services that can meet the needs of this group of families.     

Which Components of Medical Homes Reduce the Time Burden on Families of Children with Special Health Care Needs?

ObjectivesTo examine which components of medical homes affect time families spend arranging/coordinating health care for their children with special health care needs (CSHCNs) and providing health care at home.ConclusionsThree of the five medical home components were associated with lower family time burdens arranging/coordinating and providing health care for children with chronic conditions. If the 55 percent of CSHCNs lacking medical homes had one, the share of families with time burdens arranging care could be reduced by 13 percent.     

Children's Special Health Care Services Program: Impact of Administrative Changes on Rural Needs

This study measured the impact of 1993 Children's Special Health Care Services (CSHCS) program changes on the health care needs of rural children with chronic conditions who, in a 1991 study, were found to have significantly higher unmet health care needs compared to their urban counterparts. A follow-up survey was conducted in 1994 to 1995. The percentage of rural families indicating unmet needs declined for nearly all health-care-related items from 1991 to 1994-1995. The 1993 administrative changes in the CSHCS program have improved access to medical care and social support services for rural families, eliminating much of the urban-rural gap.     

Brief,Rapid Response,Parenting Interventions Within Primary Care Settings

Opportunities created by the Patient Protection and Affordable Care Act along with the increased prevalence of pediatric behavioral and mental health concerns provide new challenges for pediatric health care providers. To address these matters, providers need to change the manner by which they provide health care to families. A novel approach is providing brief, rapid response, evidence-based parenting interventions within the pediatric primary care setting. Family-focused parenting programs support the American Academy of Pediatrics recommendations of improving mental health via supports in pediatric primary care to maximize the social and psychological well-being of families. A considerable body of research indicates that parenting interventions reduce the severity and frequency of disruptive behavior disorders in children and provide support to parent by bolstering parental resilience and improving overall family functioning. Providing these services within the pediatric primary care setting addresses the need for fully integrated health services that are family-centered and easily accessible.     

A Medical Home Center: Specializing in the Care of Children with Special Health Care Needs of High Intensity

Objective Children with special health care needs (CSHCN) benefit from a medical home, however, a subset, those children with high intensity needs, have medical and social service issues beyond the capacity of most primary care practices. We describe a novel medical home center that is designed to meet the needs of children with special health care needs of high intensity (CSHCN-HI). Model of care The medical home center, U Special Kids (USK) is located at the University of Minnesota and affiliated with a tertiary medical center. USK serves CSHCN-HI throughout the state of Minnesota and, because of state supported funding for the program, children have access to the program regardless of their health insurance coverage. The team is expert at gathering an overall perspective of the child’s needs, identifying gaps, accessing services and weaving together the plethora of disparate services, agencies and providers. A major goal of this model is to transition care from USK to a primary care medical home within the child’s community. Transition is more likely to occur optimally once the child’s complex needs are organized, the family is trained, adequate management resources are in place, and the intensity of care coordination needs are reduced. Conclusions We propose that, in addition to a primary care medical home, CSHCN-HI benefit from a unique medical home center that can provide sufficient resources and expertise to organize their complex care coordination needs. Medical home centers, designed specifically to manage the care of children with complex high intensity medical and care coordination needs, have the potential to reduce excess health care utilization and improve patient outcomes by providing this group of children with customized, accessible and integrated services.     

Better medication management for Aboriginal people with mental health disorders: a survey of providers

OBJECTIVE: To explore the experiences and training needs of service providers in relation to medication management for Aboriginal people with mental health disorders. DESIGN: Survey. SETTING: Aboriginal and mainstream health and human service organisations in metropolitan, rural and remote South Australia. SUBJECTS: Aboriginal health workers, nurses, mental health workers, substance misuse workers, managers, liaison officers, social workers, police, pharmacists, general practitioners, community workers, counsellors, paramedics, educators, family support workers and others. RESULTS: The major health service issues for Aboriginal people with mental health disorders and their carers are related to access to, and availability and appropriateness of services. Quality use of medications by Aboriginal clients is influenced by drug and alcohol misuse, cost, compliance, feelings about the value of medicines, sharing of medications and unwanted side-effects. Many workers providing services to Aboriginal people with mental health disorders lack adequate training and/or resources on mental health and safe medication management; yet, are required to provide advice or assistance on these matters. CONCLUSIONS: The survey provides new, reliable evidence relevant to mental health services and medication management for South Australian Aboriginal people. It highlights the major issues impacting on quality of care and service provision, demonstrates the wide range of health and allied workers providing medication advice and assistance to Aboriginal people, and reveals workforce development needs.     

Population health and socioeconomic problems of society

The results of a social-and-hygienic study of the health condition of different social-and-economic population groups are under consideration. It was established that the income status of people determines directly their life quality, i.e. the volume and assortment of foodstuffs, the regularity and value of recreation, the mode of labor and life, a possibility to improve their professional skills, satisfaction of spiritual needs etc. The differences of the life quality between various social-and-economic groups are a social gradient predetermining the differences in their health condition. As the material welfare of a family decreases, the frequency rate of diseases among both the adults and children goes up. The property status determines a degree of availability of medical care and of medical preparations. The definition of a realistic picture of population health is necessary to provide an information foundation for determining the population's objective needs in various types of medical assistance, in medical drugs and in medical equipment means.     

Impact of Caring for Children with Special Health Care Needs on the Family: Rhode Island’s Experience

Objectives: The impact of caring for children with special health care needs (CSHCN) on their families’ finances and employment was studied. Methods: Data from the 2001 National Survey of Children with Special Health Care Needs were used to measure financial and employment problems. The level of impact was examined by child’s age, gender, ethnicity, race, mother’s education, poverty status, and severity of the child’s condition. The association between core outcome measures and the level of family impact was determined after adjusting for potential confounding factors. Results: Financial or employment problems were more likely to occur among families with young children, with incomes below 200% poverty and with children whose condition usually/always affected their activities. Compared to families without these problems, impacted families were less likely to partner in decision making, be satisfied with services, receive comprehensive care in a medical home, have adequate health insurance, and feel service systems are organized for easy use. Conclusions: Many families of CSHCN face financial and employment problems and are less likely to have a medical home, adequate insurance, and access to health care services.     

The Continuation of Home Care to Severely Impaired Children and Aged in Israel:

There are a growing number of children and aged with severe chronic health problems in the community. Mothers become the prime caregivers to these children and aging spouses or middle-aged offspring the caregivers to these aged. The services offered to these families are determined by economic and social conditions, as well as changing fashions, rather than knowledge of the patients' and caregivers' needs. The purpose of this study was to assess the impact of homecare upon families caring for children versus those caring for aged and these families' attitudes toward continuation of home care versus institutionalization. The families included in the study were drawn randomly from the case load of community nurses in central Israel. In-depth interviews were conducted with 92 families of severely impaired children and 181 families of severely impaired adults and aged in their homes. While the majority of both populations carry a heavy burden of caregiving over years. they also receive gratification from their ability to care for their patient at home. There is little difference between those caring for children and those caring for adults in their attitudes toward continuation of home care. Mental rather than physical impairment, a deteriorating illness trajectory; depression, aggression and tension of the care-giver, the absence of sufficient social support and home care services correspond with negative feelings toward continued home care. The perceived impact of caregiving responsibilities upon the caregivers' lives, the ability to tolerate and manage symptoms and above all the quality of the patient-caregiver relationship influenced the caregivers' attitudes toward institutionalization in both populations. Family attitude toward continued homecare and institutionalization of children and adults are compared and the needs for services discussed.     

The system of informal caregiving as inequality

In our setting, it is families, not the health and social services, who play the greatest role in providing continuous care to persons in need of such services. Informal health care poses two key questions with regard to the issue of equity: differences in the burdens borne by men and women, which contribute to gender inequality and, depending on their educational and socio-economic level, inequities in their ability to choose and gain access to needed resources and support services, thus contributing to social class inequalities. Distributing the burden of caregiving between men and women, and between the family and the state, constitutes a crucial debate in public health. This study analyzes the concept and characteristics of informal care, provides data on its dimensions in our setting, and analyzes the profile of caregivers, as well as the work they do and the impact it has on their lives. Finally, it presents currently existing models and support strategies for informal caregivers. It is largely women who assume the principal role of providing informal care, undertaking the most difficult and demanding tasks and dedicating the largest share of their time to them. As a result, women bear an elevated cost in their lives in terms of health, quality of life, access to employment and professional development, social relations, availability of time for themselves, and economic repercussions. Unemployed, under-educated women from the least privileged social classes constitute the largest group of informal caregivers in our country. Any policies aimed at supporting those who provide such care should keep in mind the unequal point from which they start and be evaluated in terms of their impact on gender and social class inequality.     

Home health care for the elderly.

Home health services must be expanded and must include ongoing social work services. In addition to the provision of direct service, social workers are encouraged to advocate for quality home health services, to develop effective techniques for providing social services to home-care patients, to incorporate these techniques into social work education, and to become involved in the education of their medical colleagues. In this way, the home health field can begin to fulfill its goals by providing patients with quality care in the home setting, thus allowing them to remain independent and at the same time meeting their health and social needs.     

Healthy children ready to learn: an essential collaboration between health and education.

The "Healthy Children Ready to Learn" initiative starts with the underlying concept that health is a critical partner to optimum education. All children have a right to be healthy. At a minimum, this right assumes promoting optimum use of available and effective preventive measures, such as ensuring compliance with immunization recommendations; promoting measures to prevent injuries; ensuring opportunities to identify disease and disabilities early; and providing prompt treatment when needed. Families must receive the support and assistance they need to raise healthy and educated children. Activities directed toward National Education Goals and the related National Health Promotion and Disease Prevention Objectives can advance progress toward school readiness, focus attention and available resources on needed programs and services, and thus help the nation in achieving its goal of having all children arriving at school each day healthy, well nourished, and ready to learn. To realize these goals and objectives, the two critical systems of greatest importance to children, those providing health services and education, need to collaborate, not only among themselves, but also with social services. A range of critical health problems will require our attention if the goals are to be met, such as availability of prenatal care, infant mortality, inadequate nutrition during pregnancy or early childhood, or both, disease prevention by immunization, infants who have been exposed to drugs, fetal alcohol syndrome, and the emotional and mental disorders of early childhood, to name a few. At any one time, any family may be in need of appropriate services. To address the health and well-being of their young children, a continuum of appropriate, accessible services must be available in the community. The first steps toward successful achievement of the readiness goal will require the identification of health, education, and social service programs that serve young children and their families, and the creation of a climate that fosters innovative and effective collaboration between programs at the Federal and State levels, especially as it pertains to the community. Policies and programs should be built around the needs of families. In this regard, the critical role that parents play in shaping a healthy environment conducive to school readiness must be recognized as a key element in shaping the strategies that should help in achieving the readiness goal. Similarly important is the need to engage professional organizations and other private sector groups involved with health, education, and other children's issues to work with government and families to achieve the school readiness goal and its related health objectives.     

Do State Parity Laws Reduce the Financial Burden on Families of Children with Mental Health Care Needs?

Objective. To study the financial impact of state parity laws on families of children in need of mental health services.
Data Source. Privately insured families in the 2000 State and Local Area Integrated Telephone Survey National Survey of Children with Special Health Care Needs (CSHCN) ( N =38,856).
Study Design. We examine whether state parity laws reduce the financial burden on families of children with mental health conditions. We use instrumental variable estimation controlling for detailed information on a child's health and functional impairment. We compare those in parity and nonparity states and those needing mental health care with other CSHCN.
Principle Findings. Multivariate regression results indicate that living in a parity state significantly reduced the financial burden on families of children with mental health care needs. Specifically, the likelihood of a child's annual out-of-pocket (OOP) health care spending exceeding $1,000 was significantly lower among families of children needing mental health care living in parity states compared with those in nonparity states. Families with children needing mental health care in parity states were also more likely to view OOP spending as reasonable compared with those in nonparity states. Likewise, living in a parity state significantly lowered the likelihood of a family reporting that a child's health needs caused financial problems. The likelihood of reports that additional income was needed to finance a child's care was also lower among families with mentally ill children living in parity states. However, we detect no significant difference among residents of parity and nonparity states in receipt of needed mental health care.
Conclusion. These results indicate that state parity laws are providing important economic benefits to families of mentally ill children undetected in prior research.     

When the bough breaks: provider-initiated comprehensive care is more effective and less expensive for sole-support parents on social assistance.

This 5-year study conducted in Ontario, Canada is designed to assess the effects and expense of adding a mix of provider-initiated interventions to the health and social services typically used in a self-directed manner by sole-support parents and their children receiving social assistance in a national system of health and social insurance. Results from a 2-year interim analysis show that providing social assistance families with proactive comprehensive care (health promotion, employment retraining, and recreation activities for children) compared to allowing families to fend for themselves in a self-directed manner, results in 15% more exits from social assistance within 1 year and substantial savings to society in terms of social assistance payouts. It is no more expensive to provide health and social services in a comprehensive fashion, and equivalent reductions in parent mood disorder and child behavior disorders, as well as equivalent increases in parent social adjustment and child competence levels were also observed. This study presents clear evidence that providing comprehensive care to social assistance recipients produces tremendous short- and long-term financial gains and societal benefits.     

Unmet Need and Problems Accessing Specialty Medical and Related Services Among Children with Special Health Care Needs

OBJECTIVES: To extend what is known about parent reports of their child's need for specialty medical and related services, unmet need, and specific types of access problems among children with special health care needs (CSHCN). METHODS: Using data from a 1998-1999 20-state survey of families of CSHCN, we examined differences in parent report of need for services by child characteristics, investigated parent report of unmet need and access problems by service area and number of services needed, and estimated the likelihood of four access problems and unmet need by child, family, and health insurance characteristics. RESULTS: Overall, the sample children had numerous service needs, although the prevalence of need varied by service type and child characteristics. Reports of unmet need were greater for older children and for children with multiple service needs, unstable health care needs or a behavioral health condition, parents who were in poor health or had more than a high school education, and families whose insurance coverage was inconsistent or lacked a secondary plan. Reports of access problems were greatest for mental health and home health services. The two most prevalent access problems were finding a skilled provider and getting enough visits. CONCLUSIONS: The results underscore the importance of finding new ways to link children with behavioral health problems to mental health services, implementing coordinated care and the other core dimensions of the medical home concept, increasing the number of specialty pediatricians and home health providers, and expanding coverage for a wider range of mental health services.