Chronic illness among poor children enrolled in the temporary assistance for needy families program

OBJECTIVES: This study assessed chronic child illness among recipients of Temporary Assistance for Needy Families (TANF) benefits and poor families not receiving benefits. METHODS: Data from the 1998 National Health Interview Survey were used to examine chronic child illness, enrollment in TANF, health insurance status, and selected access indicators. RESULTS: One quarter of TANF-enrolled children had chronic illnesses. Unenrolled children were 3 times as likely as TANF-enrolled children to be uninsured. Among the chronically ill, 31.7% of unenrolled and 14.3% of enrolled children experienced gaps in insurance coverage that were associated with access barriers. CONCLUSIONS: Welfare policies should consider the effects of chronic illness and gaps in insurance coverage on the health of poor children.     

Socio-Environmental Factors Associated With Lone Parenting Chronically Ill Children

This article reports findings from 2 studies assessing the relation between parental perception of “lone” parenting and socioeconomic factors, including low income, perception of child health, and parental emotional distress among parents of chronically ill children. In both studies, parents who considered themselves a lone parent when caring for their ill child had significantly lower incomes and greater distress (i.e., were more likely to score at or above clinical or “case” cutoffs on the Brief Symptom Inventory) than those who considered themselves to be married or partnered. Longitudinal research is needed to determine the impact of lone parenting and low income on parental and child health outcomes over time.     

Chronic illness from the perspective of patients and health professionals: a qualitative study in Mexico

Chronic diseases are leading causes of morbidity, mortality, and increasing expenditures in numerous countries. However, little is known about how chronic diseases are perceived and managed by social actors. This article aims to compare the perspectives of health professionals and patients towards chronic diseases, besides analyzing the relationship between these two groups. A qualitative, multi-center study was conducted in three Mexican cities: Guadalajara, San Luis Potosí, and Mexico City. Participants included chronically ill individuals, physicians, and other health professionals from primary and secondary health care centers. Data collection used focus groups and interviews. The data were analyzed using discourse analysis. Participants' perceptions varied, from the medicalized view of physicians to that of patients focused on illness and the lifeworld. The participants agreed that there are unequal relationships between health professionals, families, and the chronically ill, but that relationships are more equal among the chronically ill themselves. The article includes by discussing various implications of the findings.     

Loss of self: a fundamental form of suffering in the chronically ill

Physical pain, psychological distress and the deleterious effects of medical procedures all cause the chronically ill to suffer as they experience their illnesses. However, a narrow medicalized view of suffering, solely defined as physical discomfort, ignores or minimizes the broader significance of the suffering experienced by debilitated chronically ill adults. A fundamental form of that suffering is the loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones. As a result of their illnesses, these individuals suffer from (1) leading restricted lives, (2) experiencing social isolation, (3) being discredited and (4) burdening others. Each of these four scores of suffering is analysed in relation to its effects on the consciousness of the ill person. The data are drawn from a qualitative study of 57 chronically ill persons with varied diagnoses.     

Introduction of disease management programmes in Germany as reflected by differing interests of health insurance companies and the federal association of statutory health insurance physicians

On 1st January 2002 a law was enacted by the German Federal Government reorganising the reinsurance pool known as the "risk compensation scheme" (RSA) of the German health insurance system. This enactment contemplates a gradual restructuring of the RSA to shift from a system that considered only certain demographic criteria to one that reflects actual morbidity rates, with the shift to be phased in before full implementation by 2007. The enactment also introduced disease management programmes (DMP) for patients with certain chronic illnesses. Insurance companies will now receive additional payments from the RSA for patients with a chronic condition who are enrolled in a DMP. The intent is to improve the poor medical care for chronically ill patients in Germany - as had been stated by the advisory council of the Concerted Action in Health Care - and to reduce the natural tendency of insurance companies to prefer young healthy members over chronically ill patients. Possible consequences of the legal changes are discussed from the point of view of the various insurance companies as well as the Federal Association of Statutory Health Insurance Physicians.     

Coordinated care in a 'consumer-driven' health system

High-deductible health plans--with and without spending accounts--are gaining ground. Will these evolving benefit designs complement or undermine the coordination of care for patients with chronic illnesses? Based on an October 2005 roundtable sponsored by the California HealthCare Foundation and Health Affairs, this paper discusses the implications of a changing health insurance market for the chronically ill, capitation payment for medical groups, and consumers navigating the system.     

Welfare to work? Impact of maternal health on employment

OBJECTIVES: This study investigated whether health problems among poor mothers of chronically ill children affect their ability to obtain and maintain employment. METHODS: Mothers of children with chronic illnesses were surveyed at clinical and welfare agency sites in San Antonio, Tex. RESULTS: There were distinct health differences according to mothers' TANF and employment status. Mothers without TANF experience reported better physical and mental health and less domestic violence and substance use than did those who had TANF experience. Those not currently working had higher rates of physical and mental health problems. CONCLUSIONS: Poor maternal health is associated with need for cash assistance and health insurance. Policymakers must recognize that social policies promoting employment will fail if they do not address the health needs of poor women and children.     

Self-care among chronically ill African Americans: culture, health disparities, and health insurance status

Little is known about the self-care practices of chronically ill African Americans or how lack of access to health care affects self-care. Results from a qualitative interview study of 167 African Americans who had one or more chronic illnesses found that self-care practices were culturally based, and the insured reported more extensive programs of self-care. Those who had some form of health insurance much more frequently reported the influence of physicians and health education programs in self-care regimens than did those who were uninsured. It is concluded that the cultural components of self-care have been underemphasized, and further, that the potential to maximize chronic illness management through self-care strategies is not realized for those who lack access to health care.     

The efficacy of a senior outreach program in the reduction of hospital readmissions and emergency department visits among chronically ill seniors

This study reports on the effectiveness of a community-based senior outreach program in decreasing rehospitalizations and emergency department visits among chronically ill seniors. Participants had been repeatedly hospitalized with chronic illnesses and were subsequently served in an in-home program designed to address their psychosocial and medical needs. Participation in the program was found to be related to lower hospital readmission rates and emergency department usage. Clients also reported decreased financial concerns and depression and anxiety and increased social support. The study adds to the growing body of work supporting community-based programs as effective strategies for decreasing health care usage and improving quality of life for chronically ill seniors.     

Time to manage: patient strategies for coping with an absence of care coordination and continuity

This paper examines how people with chronic illnesses respond to absences of continuity and coordination of care. Little work has been done on how the ill person might mitigate flaws in a less than optimal system. Our qualitative research, carried out among 91 participants in Australia, reveals that people with chronic illnesses create strategies to facilitate the management of their care. These strategies included efforts to improve communication between themselves and their health care practitioners; keeping personal up‐to‐date medication lists; and generating their own specific management plans. While we do not submit that it is patients’ responsibility to attend to gaps in the health system, our data suggests that chronically ill people can, in and through such strategies, exert a measure of agency over their own care; making it effectively more continuous and coordinated. Participants crafted strategies according to the particular social and bodily rhythms that their ongoing illnesses had lent to their lives. Our analysis advances the view that the ill body itself is capable of enfolding the health system into the rhythms of illness – rather than the ill body always fitting into the overarching structural tempo. This entails an agent‐centric view of time in illness experience. A Virtual Abstract of this paper can be found at: https://youtu.be/UwbxlEJOTx8     

Mothers with chronic illness: A predicament of social construction

In the context of a larger qualitative study, a database including extensive interviews with a subset of sixteen chronically ill mothers was obtained. Secondary analysis revealed that the women's concerns about themselves and their children included issues of performance, availability, dependency, and socialization. Further, these women reported that the health care system seemed incapable of recognizing or accounting for the profound interrelationship between their mothering and their illness. Analysis of these findings in terms of the conflicting social obligations inherent in the roles of “mother”; and of “chronically ill person”; provides a means by which to understand the women's impressions that it was a contradiction in terms to be both an effective mother and a good patient.     

Clinical Ecology —an Unproved Approach in the Context of Environmental Medicine: Klinische Ökologie —eine unkonventionelle Richtung im Bereich der Umweltmedizin

This contribution outlines the historic development of Clinical Ecology (CE) and the differences it poses to scientific environmental medicine. The pathogenic, diagnostic and therapeutic concepts of clinical ecology are presented and critically acknowledged. Particular attention is given to behavioral and mental illnesses which, according to the beliefs of clinical ecologists, are related to food and chemicals, whereby this occurrence is considered a “cerebral allergy”. The term “allergy” is, however, understood in the broader sense, as opposed to the usual medical term, to include non-immunological, pseudo-allergic and other intolerance reactions. Below are details of the validity and effectiveness of clinical ecology methods.Clinical ecology is concerned, not least, with unspecified, little understood health disorders and chronically fluctuating illnesses which are mainly attributed by clinical medicine to psychosomatic complaints. Many patients are critical of the lack of an adequate, literally “integral” treatment, i. e. one which also includes psychosocial aspects. They tend to search for simple answers and “alternative” treatment possibilities associated with it. Clinical ecologists and other “alternative practitioners” respond to this demand. They initially confirm or suggest to the patient the possibility of poisoning and offer a therapy that is allegedly causal and effective. The iatrogene fixation of patients with environment related illnesses has become a problem for the person in question, clinical medicine and the insured. Of course, those affected interpret their situation in another way. They consider themselves to be the victims of medical ignorance.The challenge posed by unconventional schools of medical thought should be met by increased efforts to create “sound medical practice” and by the attempt to achieve generally binding criteria for quality in the sense of effective “consumer protection”.     

Making managed care work for people with disabilities

Over two years ago, with states increasingly moving to contract with managed care organizations for the care of people with disabilities and chronic illnesses, States of Health explored the concerns of some of these health care consumers and their families. Worries centered on the health plans' lack of experience serving disabled and chronically ill patients; the prevalence of a medical model of care, which undervalues services that enable a person to maintain a high quality of daily life; and incentives to cut costs that would result in inappropriate or negligent care. Little has been resolved since then. A few health plans--mostly small specialty plans--serve as oases of best practices, but their attitudes and ways of operating are far from adoption across the board. Advocates argue that the best targeted, most reliable consumer protections involve consumers themselves in the planning, design, and implementation of managed care programs.     

The economic burden of home care for children with HIV and other chronic illnesses

OBJECTIVES: We compared types, amounts, and costs of home care for children with HIV and chronic illnesses, controlling for the basic care needs of healthy children to determine the economic burden of caring for and home care of chronically ill children. METHODS: Caregivers of 97 HIV-positive children, 101 children with a chronic illness, and 102 healthy children were surveyed regarding amounts of paid and unpaid care provided. Caregiving value was determined according to national hourly earnings and a market replacement method. RESULTS: Chronically ill children required significantly more care time than HIV-positive children (7.8 vs 3.9 hours per day). Paid care accounted for 8% to 16% of care time. Annual costs were $9300 per HIV-positive child and $25,900 per chronically ill child. Estimated national annual costs are $86.5 million for HIV-positive children and $155 to $279 billion for chronically ill children. CONCLUSIONS: Informal caregiving represents a substantial economic value to society. The total care burden among chronically ill children is higher than that among children with HIV.     

Health-related quality of life and mental health problems after a disaster: Are chronically ill survivors more vulnerable to health problems?

Studies have shown that the chronically ill are at higher risk for reduced health-related quality of life (HRQL) and for mental health problems. A combination with traumatic events might increase this risk. This longitudinal study among 1216 survivors of a disaster examines whether chronically ill survivors had a different course of HRQL and mental health problems compared to survivors without chronic diseases. HRQL and mental health problems were measured 3 weeks, 18 months and 4 years post-disaster. Data on pre-disaster chronic diseases was obtained from the electronic medical records of general practitioners. Random coefficient analyses showed significant interaction effects for social functioning, bodily pain and emotional role limitations at T2 only. Chronically ill survivors did not consistently have a different course of general health, physical role limitations, and mental health problems. In conclusion, chronic diseases were not an important risk factor for impaired HRQL and mental health problems among survivors.     

Uncertainty and the Undervaluation of Services for Severe Health States in Cost-Utility Analyses

Objectives

To test the hypothesis that the “severity effect”—the preference for more than utility-maximizing expenditure on severe health states—may be the result of, or exacerbated by, the uncertainty associated with the chance of contracting the illness that causes the severe health state.

On sitting and doing: Ethnography as action in global health

Contemporary discussions within the arenas of medical anthropology and global health are often restricted by the driving imperatives to “do something” about a particular health problem. Drawing on ethnographic fieldwork conducted in Nepal in 1997, which sought to follow the translation of AIDS prevention policies into local awareness, this paper addresses the need to revitalize theories of ethnography for an understanding of global health goals. The Nepal example underscores how the path toward decisions is never entirely clear, nor is it always obvious who benefits or loses from different approaches, even as public health discourse seeks to set a strict agenda around what the problem is and what should be done about it. Ethnography shows that definitions of what matters as well as understandings of why certain things matter are formulated from specific social locations. The paper therefore advocates for a practice of patient ethnographic “sitting” as a means to understanding, as a form of critical reflexivity, and as a diagnostic of the politics of relevance.     

Employment barriers among welfare recipients and applicants with chronically ill children

OBJECTIVES: This study evaluated the association of chronic child illness with parental employment among individuals who have had contact with the welfare system. METHODS: Parents of children with chronic illnesses were interviewed. RESULTS: Current and former welfare recipients and welfare applicants were more likely than those with no contact with the welfare system to report that their children's illnesses adversely affected their employment. Logistic regression analyses showed that current and former receipt of welfare, pending welfare application, and high rates of child health care use were predictors of unemployment. CONCLUSIONS: Welfare recipients and applicants with chronically ill children face substantial barriers to employment, including high child health care use rates and missed work. The welfare reform reauthorization scheduled to occur later in 2002 should address the implications of chronic child illness for parental employment.     

Physician Assimilation in Medical Schools: Dualisms of Biomedical and Biopsychosocial Ideologies in the Discourse of Physician Educators

Although health communication research and popular literature on physicians have heightened awareness of the dualisms physicians face, research is yet to focus on the discourse of physician educators who assimilate students into medicine for dualisms of the biomedical (BMD) and biopsychosocial (BPS) ideologies. The study drew on a dualism-centered model to analyze the discourse of 19 behavioral science course directors at 10 medical schools for the emergence of dualisms in instantiations of BPS ideologies and for the management of dualism in discourse that instantiated both BMD and BPS ideologies as part of the curriculum. Dualism emerged in the BPS ideologies of “patient-centeredness” and “cultural competence.” While a dualism between “patients’ data” and “patients’ stories” emerged in the patient-centeredness ideology, a dualism between enhancing “interaction skill” and “understanding” emerged in the cultural competence ideology. Moreover, the study found educator discourse managing dualism between BMD and BPS ideologies through the strategies of “connection” and “separation.” The study concludes with a discussion and the implications for theory and research.