Internalizing stigma associated with mental illness: findings from a general population survey in Jamaica.

OBJECTIVES: The culture of stigma associated with mental illness is particularly intense when persons who are normally victims of that stigmatization (mentally ill persons and their family members) themselves act negatively toward others whom they associate with mental illness. We attempt to determine the extent of this internalization and assimilation of stigmatizing attitudes, cognitions, and behaviors in persons who are at risk for such stigmatization in Jamaica. METHODS: Data from a 2006 national survey on mental health were analyzed. Demographic variables, the presence or absence of mental illness in respondents and in their family members, and responses pertaining to behaviors and attitudes toward mentally ill persons were examined. Subsamples (respondents with mental illness, respondents with a family member with mental illness, respondents with neither) were compared using the chi-square test. RESULTS: Respondents with family members with mental illness were less likely to demonstrate a number of different manifestations of stigmatization than others (P=0.009-0.019). Respondents with mental illness showed no difference in the demonstration of a number of different manifestations of stigmatization from other respondents (P=0.069-0.515). CONCLUSIONS: The small number of mentally ill respondents resulted in low statistical power for demonstrating differences between that subgroup and other respondents. The significantly more positive attitudes and behavior of respondents with family members with mental illness suggest that some benefit may be gained by creating more opportunities for the general public to interact with persons with mental illness.     

Professional-led versus family-led support groups: Exploring the differences

Support groups often help families cope more effectively with relatives' mental illnesses. This study examines the differences between support groups led by professionals and those led by family members, focusing specifically on group participation benefits and group content. Results indicate that participants of both professional and family-led groups reported that the groups provided them with needed information about mental illness and its treatment and that the groups improved their relationships with their ill relatives. Professional-led groups placed a greater emphasis on the relatives' problems and coping with emotions, and family-led groups placed a greater emphasis on advocacy. Suggestions are provided regarding increased collaboration between professional and family-led support groups.     

Effects of patients with bipolar, schizophrenic, and major depressive disorders on the mental and other healthcare expenses of family members

Family members who live with patients with serious mental disorders incur increased healthcare expenses. A retrospective study measured these increased expenses using administrative data from a large Blue Cross Blue Shield health plan in the USA. Mental and other healthcare expenses of family members of patients with bipolar disorder, schizophrenia, or major depression were compared to those of control family members. Ordinary least squares and logistic regression were used to estimate differences. In comparison with control (families of two or more members without these psychiatric disorders), mental and other healthcare expenses per family member per month were increased for subject family members as follows: bipolar disorder, $8.85 (213%; P<0.0001) and $10.65 (7.4%; P<0.0001); schizophrenia, $4.03 (81%; P<0.0001) and $5.96 (4.2%; P<0.005); and major depression $8.24 (219%; P<0.0001) and $9.46 (6.5%; P<0.0001). Among other factors, older family members had a greater likelihood of using mental healthcare and higher levels of other healthcare; males were less likely than females to use mental healthcare but had higher levels of other healthcare, and managed forms of coverage were associated with higher levels of both mental and other healthcare. We conclude that living with a person with serious mental illness significantly increases healthcare expenses of family members, especially mental healthcare. Family members of patients with bipolar disorder and major depression experienced larger increases in expenses than family members of patents with schizophrenia, despite the fact that patients with schizophrenia were more seriously ill as reflected in the much higher mental healthcare expenses of these patients.     

Estimating the employment and earnings costs of mental illness: recent developments in the United States

Substantial attention has recently been focused on both the prevalence and consequences of mental illness. Generally, public interest in the costs of mental illness has been limited to the direct costs of treating the mentally ill. In this paper, we consider the magnitude and importance of a major component of the indirect costs of mental illness: employment and earnings losses. We first describe the technical difficulties involved in estimating these costs. We then describe new data and recent advances in the United States that have improved our ability to make such estimates. Our conclusions from the recent research are that each year in the United States 5-6 million workers between the ages of 16 and 54 lose, fail to seek, or cannot find employment as a consequence of mental illness. Among those who do work, we estimate that mental illness decreases annual income by an amount between $3,500 and $6,000. We then discuss an emerging challenge to the traditional method for arriving at such estimates: the friction cost approach. We describe both the conceptual and technical differences between the friction cost method and the traditional human capital approach. We conclude that while economic context has much to do with whether one relies on human capital or friction cost estimates, each can offer useful information about labor market losses due to mental illness.     

Decomposing the effects of children's health on mother's labor supply: is it time or money?

In this paper, I explore how children's health influences the wages and work hours of their mother. Some children have illnesses that require expensive medicine or treatment, but demand little parental time. Others require extraordinary amounts of time; and still others require care at unpredictable times of the day. I construct a theoretical model of mother's labor supply that explicitly incorporates the financial and time costs associated with the presence of unhealthy children. The model predicts that children with time-intensive illnesses and those with unpredictable illnesses negatively influence mother's labor supply, whereas children with illnesses with a strong financial component have a positive effect on mother's labor supply. In order to empirically test this, I organize a focus group of doctors to categorize illnesses and disabilities by the type of resources they require. Using the 1997 PSID Child Development Supplement, I estimate the effects of these requirements on mother's decision to work and work hours. After controlling for the financial burden of the illness, single mothers work fewer hours if their child has a time-intensive illness and married mothers are less likely to work and work fewer hours if their child has a severe condition with an unpredictable time component. These findings are consistent with the theoretical model and highlight the need to decompose the effects of child health on mother's work status. Model specifications that aggregate across illnesses are incapable of disentangling these effects and may therefore underestimate the welfare costs of having a sick child in the family.     

Effect of Bereavement on the Health of the Remaining Family Members

Van Eijk J, Smits A, Huygen F and van den Hoogen H. Effect ofbereavement on the health of the remaining family members. FamilyPractice 1988; 5: 278–282. This investigation focusses on the effect of the death of afamily member on the number and type of diagnosed illnessesof the remaining members. The data on mortality and morbiditywere obtained from a continuous morbidity register. A totalof 225 cases of death were selected, involving 313 family members.A control group of 4909 people who had not been confronted witha death of a family member were selected. A comparison of morbidityrates for the two groups showed that morbidity rates, both forminor and serious illnesses, were affected by the death of afamily member. Increases in minor illnesses occurred more oftenwhen people had been confronted with death after a chronic illness;increases in serious illnesses were mainly found among peopleconfronted with sudden death. Surprisingly, people with nervousdisorders in their medical history showed fewer diagnoses forminor illnesses after a sudden death of a family member. Anexplanation may be found in the basic principles of family medicine.     

Variation in the Spillover Effects of Illness on Parents,Spouses, and Children of the Chronically Ill

Background

Given the broad scope of the spillover effects of illness, it is important to characterize the variability in these outcomes to identify relationship types in which secondary impacts of illness are particularly important to include in health economic evaluations.

Purpose

To examine heterogeneity in spillover effects of chronic conditions on family members by type of familial relationship with patient.

Methods

Adults (aged ≥18 years) and adolescents (aged 13–17 years) who had a parent, spouse, or child in their household with a chronic condition (Alzheimer’s disease/dementia, arthritis, cancer, or depression) were recruited from a US national panel to participate in an on-line survey. Respondents were asked to rate the spillover effect of their family member’s illness on their own health on a 0–100 scale, with lower scores indicating greater spillover. Regression analysis was used to evaluate the association between rating scale scores and relationship with an ill family member (ill parent, child, or spouse) for each illness separately, controlling for caregiving responsibility and the health status of the ill family member.

Results

1,267 adults and 102 adolescents met inclusion criteria. In adjusted analyses, having a sick child was significantly (p < 0.05) associated with lower rating scale scores compared with having a spouse with the same condition (cancer: ?24.2; depression ?9.7). Having a non-elderly or elderly adult parent with a condition, compared with a spouse, was significantly associated with lower rating scale scores for arthritis (?3.8) and depression (?5.3), but not for Alzheimer’s disease/dementia or cancer.

Conclusions

The impact of illness on family members, measured with a rating scale, varies by relationship type for certain illnesses. Having a child with cancer, a parent with arthritis, or either with depression, is significantly associated with greater spillover, compared with having a spouse with one of these conditions.     

Health-related quality of life in family members of patients with an advanced cancer diagnosis: A one-year prospective study

ABSTRACT: BACKGROUND: Receiving a cancer diagnosis affects family members as well as the person diagnosed. Family members often provide support for the sick person in daily life out of duty and love, and may not always think of their own vulnerability to illness. To individualise support for them, family members who are most at risk for becoming ill must be identified. The aim of this study was to investigate health-related quality of life (HRQOL) in family members of patients with advanced lung or gastrointestinal cancer 3 to 15 months after diagnosis. METHODS: Data on mental and physical dimensions of HRQOL were collected from family members of these patients in this prospective quantitative study. Five assessments using the Short Form 36 Health Survey (SF-36) and EuroQol (EQ-5D) were conducted during a 1-year period starting 3 months after diagnosis. Thirty-six family members completed the study, i.e. participated in all five data collections. RESULTS: No statistically significant changes in physical or mental HRQOL within the study group appeared over the 1-year follow-up. Compared with norm-based scores, family members had significantly poorer mental HRQOL scores throughout the year as measured by the SF-36. Family members also scored statistically significantly worse on the EQ-5D VAS in all five assessments compared to the norm-based score. Findings showed that older family members and partners were at higher risk for decreased physical HRQOL throughout the 1-year period, and younger family members were at higher risk for poorer mental HRQOL. CONCLUSIONS: It is well known that ill health is associated with poor HRQOL. By identifying family members with poor HRQOL, those at risk of ill health can be identified and supported. Future large-scale research that verifies our findings is needed before making recommendations for individualised support and creating interventions best tailored to family members at risk for illness.     

Labor market conditions and employment of the mentally ill

BACKGROUND: The mental health services literature includes assertions that workers with mental illness are at earlier risk of unemployment than other workers when the economy contracts. This possibility is important for several reasons. One is that such a phenomenon would support the argument that the lives of mentally ill persons are made unnecessarily stressful by the stigma of mental illness. Another is that the phenomenon could distort comparisons of the effectiveness of programs designed to prepare persons with severe mental illness for work. Despite its importance, the assertion that severely mentally ill workers are at early risk of unemployment has never been empirically tested. AIMS OF THE STUDY: We aim to test the hypothesis that unemployment among persons with severe mental illness (SMI) increases before job loss among other workers. METHODS: We test the hypothesis by applying Granger causality methods to time-series data collected in two communities in the United States (i.e., Concord and Manchester, NH) over 131 weeks beginning on 12 May 1991. RESULTS: We find no relationship between job loss in the labor market and the likelihood that persons with SMI will be unemployed. DISCUSSION: We speculate that persons with SMI participate in the secondary labor market and that their employment status is unlikely to be well described by data gathered in the primary labor market. This implies that widely available measures of labor market status, which are designed to describe the primary labor market, cannot be used to improve the evaluation of programs intended to prepare the mentally ill for work. We also discuss the possibility that persons with SMI may have needs that are better met by the secondary than by the primary labor market. CONCLUSIONS: The intuition that workers with severe mental illness are affected earlier than other workers by labor market contraction may not be correct. We infer that persons with severe mental illness may participate in the secondary labor market about which we know relatively little. We cannot, therefore, easily adjust program evaluations to disentangle intervention effects from those, if any, of the labor market.     

Evaluating mental health care reform: Including the clinician,client, and family perspective

This article suggests one direction that theory building might take to develop a stronger conceptual foundation needed to test the effect on clients of reforms in the financing and organization of mental health care delivery systems. The authors recommend that health status outcomes be measured from three perspectives: the client, who can best report his or her own subjective experience of illness; the clinician, who is the best source of information about the client’s disease; and the family, which is the best source of information about the effects on members’ health status of caring for a mentally ill family member. The authors also recommend that measurement of health status should be multidimensional.     

The impact of adverse health events on consumption: Understanding the mediating effect of income transfers,wealth, and health insurance

Using data from the Panel Study of Income Dynamics for years 1999–2013, we investigate the impact of physical and mental illnesses on household consumption and financial status. In comparison to severe physical health problems, mental illnesses lead to larger decreases in labor income. Increases in public and private transfers following the onset of a mental illness do not completely offset the decline in labor income. Consequently, we find a significant decrease in consumption expenditures after the household head experiences a mental problem. On the other hand, public and private transfers and accumulated wealth offset the relatively smaller decline in labor income and enable households with severe physical problems to smooth their consumption. Health insurance helps to prevent larger drops in consumption after the onset of a mental health problem.     

The power gap: freedom, power and mental illness

Up to one in four individuals in the US meet the diagnostic criteria for a mental illness in any given year and a significant proportion have severe or recurring illnesses (e.g. schizophrenia). Despite this prevalence, mental health services remain poorly funded, mental illness remains misunderstood and individuals with recurring illness are constrained to live lives characterized by isolation, under-employment, stigma and denial of rights. Here I examine the idea that this situation is attributable, at least in part, to the ways in which the freedom and power of the mentally ill are undermined by a range of factors, including: (i) dispersion of political power amongst interest groups, which, combined with the relatively wide distribution of the 'interest' of mental illness, has the paradoxical result that mental health interest groups do not command political power proportional to the number affected; (ii) systematic exclusion of the mentally ill from full participation in civic, social and political life (structural violence), resulting in a lack of emphasis on mental health on political agendas and the exclusion of certain policy options as possible responses and (iii) difficulties the mentally ill may experience recognizing or articulating their own needs the absence of effective health-care systems, and the absence of knowledge about alternative systems. I argue that the enhancement of individual agency is central to efforts to address this power gap, including: (i) rights-based approaches, involving the enhancement of national mental health legislation, improvement of advocacy, empowerment and guardianship processes and development of governance, accountability and quality procedures in mental health services; (ii) approaches based on enhancing direct political participation, including voter-registration programmes and development of larger, more effective interest groups and (iii) additional approaches, including increasing accountability throughout services, recognizing the effects of socio-political change on the context of care and adapting the concept of 'soft power' to strengthen advocacy programmes.     

Communication between people with schizophrenia and their medical professionals: a participatory research project

The authors describe a participatory research project undertaken by a group of people with schizophrenia under the guidance of a university researcher. Participatory research involves members of the research group in meaningful participation in all stages of the research process. In this study, group members chose the topic-experiences with medical professionals-and method of data collection-in-depth interviews that they conducted with each other. They developed and performed a readers' theater presentation of the results and their recommendations for how they would like to be treated by medical professionals. The results indicate that good communication with medical professionals is essential to people with schizophrenia; it helps them accept the fact that they are ill and learn to live with the illness. The research offered a transformative experience to group members and is contributing to change in the practice of health care for people with severe mental illnesses.     

Brown versus New York: the Rashomon of delivering mental health services in the 1990s.

This article examines a case study of one homeless mentally ill woman in New York City to show the differing perspectives on mental illness among mental health consumers, family members, mental health professionals, and advocates. Different issues emerge, and different priorities for care become clear. The social worker as case manager must design intervention strategies based on these differing perspectives, a crucial challenge for the profession. This article reviews the current literature on case management and suggests a holistic approach that better meets the needs of mentally ill people, their family members, and the community.     

Symptom Effects on Employment in a Structural Model of Mental Illness and Treatment: Analysis of Patients with Schizophrenia

BACKGROUND: There is a long tradition in the health and mental health economics literatures of estimating the impacts of disorders on employment and earnings. Several analyses have associated mental illness with poorer labor market outcomes, often using indicators of disorders to measure mental illness, but it is unclear to what extent unobserved medical treatment biases the estimated impacts of disorders on labor market outcomes. In this study we argue that in order to judge the true employment costs of mental illness and the potential benefits of treatment it is necessary to account for the structural relationship between treatment, symptoms, and employment outcomes. AIMS OF THE STUDY: The study proposes a structural model for understanding mental illness impacts on employment and empirically estimates one element of this structural model that links symptoms of schizophrenia to patients' employment status. In addition, we use our empirical estimates to simulate employment consequences of more effective treatment and reductions in symptom levels. EMPIRICAL METHODS: Our empirical analyses use a sample of 1,643 adults with a schizophrenia diagnosis. We predict the likelihood of three outcomes - not employed, employed in a sheltered or supported job, and employed in a non-supported job. Analyses include measures of demographic characteristics, illness history, location differences, and detailed symptom measures. RESULTS: We find that negative symptoms have a substantial adverse impact on participation in both non-supported jobs and in sheltered or supported jobs. The impacts on employment of other symptoms of schizophrenia are not as large, but significant effects are also found for symptoms of depression. Simulations suggest, however, that only one-third of consumers would be employed in any type of job even given a large reduction in symptom levels. DISCUSSION: Negative symptoms are particularly important for role functioning and employment. The marginal effect on employment of a reduction in negative symptoms is several times greater than the effect of a comparable reduction in positive symptoms. Moreover, the effect of an improvement in symptoms on employment is stronger for non-supported employment than for working in sheltered or supported employment. Although commonly measured symptoms of schizophrenia impact employment, greater control of symptoms alone is unlikely to lead to large increases in employment for persons with schizophrenia in the near term. IMPLICATIONS FOR HEALTH CARE PROVISION AND USE: These findings suggest that improved treatment that results in reduced symptom levels will increase rates of employment among persons with schizophrenia, but that large employment impacts probably also require more effective rehabilitative therapies that target improvement in functioning. IMPLICATION FOR POLICY: Expansions of supported employment opportunities and removal of work disincentives in public income-support programs are two additional measures that may help to increase employment participation.     

Serious Illness and Family Dynamics. 2. Changes in Consulting Patterns of the Afflicted Family Members

Van Eijk J Th M (Department of Family Medicine, University ofNijmegen, St Annastraat 284, 6525 Nijmegen, The Netherlands).Serious illness and family dynamics. 2. Changes in consultingpatterns of the afflicted family members.Family Practice 1985;2: 70–75. This article examines the effect of an acute serious illnessin one member of a family on the subsequent health behaviourof that patient. The number of consultations made before andafter their acute serious illness was measured for 35 patientsand compared with a control group of 708 family members whohad not experienced an illness. An increase in the number of minor and serious complaints wasnoted in the year after the illness. In the case of minor complaintsthe changes ranged from four more complaints to six less, thusenabling the effect of background family characteristics—flexibility,conflict avoidance and family strain—to be investigated.More flexibility and lower family strain correlated with lesspresented morbidity. Other variables such as age and size offamily also correlated with morbidity. The role of the generalpractitioner in giving assistance to patients affected by alifethreatening disease and their family members therefore goesmuch further than just the treatment of the acute illness itself.     

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.     

Choice of health insurance by families of the mentally ill

This paper investigates whether choice of health insurance is influenced by the perceived mental and physical health of family members among a sample of policy-holders with private health insurance. A multinomial probit model of the choice among major medical coverage only, traditional full coverage, and coverage through a health maintenance organization is estimated. Results indicate that the presence of at least one family member who rates his or her general health as poor does not affect the policy-holder's choice of health insurance. However, the presence of at least one family member considered at risk of mental illness does in some instances affect the policy-holder's choice of health insurance: We observe significant effects for policy-holders who are female, black, have some college education, work for a large firm, and live in an urban area. These findings suggest that adverse selection may arise when individuals are able to choose between health insurance policies with different degrees of coverage for mental health care and that such effects are far more pronounced for those people who consider themselves at risk for mental illness than physical illness.     

The impact of diabetes on employment in Canada

This paper examines the impact of diabetes on the employment of Canadian males and females ages 15-64. Using data from the National Population Health Survey (1998), it utilizes a recursive bivariate probit approach to take into account the potential endogeneity of diabetes in employment outcomes. The results suggest that treating diabetes as exogenous yields an over-estimation of its impact on male employment. The study finds that diabetes has a significant negative impact on female employment probability, but has no significant impact on that of non-white Canadians. An implication thus is that policy-makers should take endogeneity into account in estimating labor market costs of chronic diseases such as diabetes.