Unmet service needs of families of young children with chronic illnesses and disabilities

Data about health and educational services were collected from 187 families with young children (under two years) who have chronic illnesses and disabilities. The purpose was to assess parents' satisfaction with services their families received and to identify families' unmet service needs as well as the reasons for these unmet needs. Although families' ratings of the adequacy of services are relatively high, 28% of the families report unmet service needs. The unmet needs most often reported are occupational, physical, or speech therapy; respite care/child care; and special education. Lack of funding is the most commonly given reason for unmet needs. Children with multiple impairments are at highest risk for unmet needs. Only 22% of unmet needs reported at the initial interview have been met by the time of the six-month follow-up. Increased coordination and monitoring of services across service sectors are indicated. Her research interests include the effects of disability on family identity and families' responses to minority stress. She received her Ph.D. from the University of Minnesota. She gratefully acknowledges Shelley Blazis and Nadav Casuto for statistical consulting. Her research interests focus on the impact of chronic illness and disability on families. She received her Ph.D. from the University of Minnesota. Her research interests include families and health and chronic illness and disability in children. She received her Ph.D. in Family Social Science at the University of Minnesota. His areas of interest include neurodevelopmental outcomes of low birth weight infants and training in developmental pediatrics. He was graduated from the University of Minnesota Medical School. His areas of interest include adolescents with chronic illness and disabilities, adolescent sexual decision making, and international adolescent health care issues. He was graduated from Howard University College of Medicine was awarded his earned doctorate in Health Policy from the University of Minnesota. Preparation of this article was supported by the National Institute on Disability and Rehabilitation Research Grant #H133890012.     

Gay Bars and Serendipity

Abstract

HIV/AIDS continues to be a serious public health issue. As HIV changes from an acute disease to a more chronic illness, it places increased responsibility on family caregivers to provide on-going assistance. Based on a conceptual model of caregiving resilience, this study found high variation in caregiving outcomes with many caregivers demonstrating high levels of well-being despite adverse life circumstances. Factors that contributed significantly to caregiver well-being included income, caregiver health, discrimination, multiple loss, dispositional optimism and self-empowerment. These findings suggest that HIV/AIDS and caregiving entail more than stress and distress and that future research needs to consider caregiving within the context of a historically disadvantaged community, resilience of informal caregivers, and risk and protective factors at the personal, cultural and community levels. Such information is necessary to design community-based interventions to support informal caregivers and persons living with HIV/AIDS.     

Caring for a demented relative at home: Effects on parent–adolescent relationships and family dynamics

Informed by a family systems perspective, the main purpose of this study was to identify changes in parent–adolescent relationships and in family dynamics when a family member with Alzheimer's or similar dementia moves into the household. The data, based on in-depth interviews with 17 adolescents, revealed that the care situation induces both positive and negative changes in family relationships. On the one hand, adolescents showed considerable empathy and respect for the parent who is the primary caregiver and reported that joint involvement in caregiving enhances adolescent–parent bonds. On the other hand, the adolescents lamented restrictions on their own and the family unit's activities due to the care situation. They also complained about spillover of caregiver stress on other family relationships and about parent-caregivers' focus of attention on the care recipient. These negative features strongly influenced adolescents' adaptation to the care situation. Overall, the results confirm the importance of a family systems perspective for understanding of and intervention in family caregiving for demented relatives. Family life educators should convey the importance of family dynamics in caregiving situations to their audiences, and family practitioners should be aware that an exclusive focus on the primary caregiver's problems may hamper adaptation of other family members (and especially adolescents) who are involved in the care situation.     

‘I'm Home for the Kids’: Contradictory Implications for Work–Life Balance of Teleworking Mothers

This study explores the experience of time flexibility and its relationship to work–life balance among married female teleworkers with school‐aged children. Drawing from a larger study of teleworkers from a Canadian financial corporation, 18 mothers employed in professional positions discussed work, leisure and their perceptions of work–life balance in in‐depth interviews. Telework was viewed positively because flexible scheduling facilitated optimal time management. A key factor was the pervasiveness of caregiving, which could result in ongoing tensions and contradictions between the ethic of care and their employment responsibilities. The ideology of ‘intensive mothering’ meant that work schedules were closely tied to the rhythms of children's school and leisure activities. The different temporal demands of motherhood and employment resulted in little opportunity for personal leisure. Time ‘saved’ from not having to commute to an office was reallocated to caregiving, housework or paid employment rather than to time for their self. The women also experienced a traditional gendered division of household labour and viewed telework as a helpful tool for combining their dual roles. Time flexibility enhanced their sense of balancing work and life and their perceived quality of life. At the same time, they did not question whether having the primary responsibility for caregiving while engaged in paid employment at home was fair or whether it was a form of exploitation.     

The Long‐Term Effects of Caregiving on Women's Health and Mortality

Caregivers experience numerous mental and physical health effects from the stress of providing care, but we know little about whether these problems persist in the long term and whether long‐term effects differ across caregiving contexts. Using the National Longitudinal Survey of Mature Women, we examined the relationship between caregiving and long‐term patterns of depressive symptoms, functional limitations, and mortality. We also explored the health effects of caregiving in‐home versus out‐of‐home and by caregiver/care‐recipient relationship. Analyses show that in‐home spousal and parental caregiving predict increased depressive symptoms and functional limitations in the long term but are unassociated with mortality, whereas caregiving outside the home is unassociated with later depression and functional limitations but predicts a lower risk of mortality. This study highlights the usefulness of approaching stressful experiences such as caregiving from the life course perspective, viewing them as processes that unfold over time within specific contexts that may carry delayed or cumulative consequences.     

Perceived stress among nonmetropolitan Utah residents

This article examines relationships between perceived stress and variables such as life events, differential economic satisfaction, health problems, and sociodemographic characteristics among respondents in three nonmetropolitan areas in Utah. The three most predictive factors related to perceived stress are economic satisfaction, life events experienced, and religion. The analysis shows an inverse partial relationship between perceived stress scores and economic satisfaction, and a positive partial relationship between the number of life events and perceived stress. Non-Mormons report higher levels of stress than Mormons. A positive but weak relationship is observed between stress and household size. Weak inverse relationships are observed between stress and a measure of household unemployment, income, and respondent's sex.Richard S. Krannich received his Ph.D. from Pennsylvania State University. He is an Associate Professor of Sociology, and Director of the Institute for Social Science Research on Natural Resources, Utah State University, Logan, UT84322-0730. His research interests include rural development processes, community change, and social responses to natural resource developments.Pamela J. Riley received her Ph.D. from Washington State University. She is currently an Associate Professor, Department of Sociology, Utah State University, Logan, UT 84322-0730. Research interests include rural family stress, the impacts of tourism on developing countries, and social aspects of on-farm water management.Ann Leffler is an Associate Professor of Sociology and Director of the Liberal Arts and Sciences Program, Utah State University, Logan, UT 84322-0730. Research interests include nonmetropolitan family stress. She received her Ph.D. from the University of California at Berkeley.     

Uncounted care

Family care (care for dependent persons at home by family members and friends) is widely endorsed, politically and personally, as the chronic care option that is superior to institutionally-based, formal care services. Politicians, health planners, and analysts may be especially supportive of a preferred form of care which is also believed to be economical. But the full costs of family care, including the value of the unpaid work of caregivers, are rarely acknowledged. This article reviews studies of caregiving and its costs and acknowledges the gender bias inherent in caregiving which has been regarded as free before its costs were calculated. Policy and health care practice will benefit from examination of both the costs and benefits of family care.Debbie Ward is Assistant Professor in the Community Health Care Systems Department of the School of Nursing (mail stop SM-24) at the University of Washington, Seattle, WA 98195. She trained as a family nurse practitioner at Yale University in New Haven, Connecticut, and earned her Ph.D. in health policy from Boston University. Her research interests include women's paid and unpaid labor, and public health policy.     

The evolution of fetal protection policies

This article examines the evolution of fetal protection policies (FPPs) by detailing their historical legacy and a range of contemporary social forces that have contributed to their maintenance. It is based on a case study of the 1977 U.S. Department of Labor, Occupational Safety and Health Administration (OSHA) hearings to revise the industrial lead standard, the 1991 U.S. Supreme Court decision that such policies are unconstitutional (United Auto Workers v. Johnson Controls, 1991), and the case law preceding that decision. A primary issue is the notion that women and fetuses are disproportionately susceptible to lead. This study reveals the ways in which this belief is framed, disputed, and appropriated by various parties to the fetal protection policy debate. Implications of this case study for family health policy are also discussed. Her research interests include work-family linkages, intergenerational relations, and caregiving across the life course. She received her Ph.D. from The University of Pennsylvania. She gratefully acknowledges Tadlock Cowan and Beth Anne Shelton for helpful comments and Marc Hallee for research assistance.     

Using psychometric analysis to evaluate the construct validity and reliability of the Coping Response Indices

The Coping Response Indices developed by Billings and Moos (1984a) are frequently used in stress research in the social science and clinical fields. These indices were originally developed in a clinical setting using a conceptual process rather than psychometric methods. This study investigates the factorial structure of the Coping Response Indices scale using a nonclinical sample. Principal components analysis with varimax rotation yields three distinct dimensions within the scale. Considerable support is found for the conceptualization of the Coping Response Indices, as proposed by Billings and Moos. There is also some indication, however, that the conceptualization and measurement of the indices need further revision and testing, especially if they are to be used in social science research. Her research interests include economic strain, stress and coping, and child functioning in diverse family structures. She received her Ph.D. from Oregon State University. Her research focuses on vulnerable children and families, life-span caregiving issues, intergenerational relations, and prevention of child abuse and neglect. She received her Ph.D. from Oregon State University. Her research focuses on family resource management, work, stress, and families, and multiple role management. She received her Ed.D. from Utah State University.     

Restorative home environments for family caregivers

Caregiver stress negatively affects caregiver health and the overall quality of in-home caregiving. While environmental interventions such as home modifications help caregivers manage stressful functional aspects, interventions for managing stressful emotional aspects are unexplored. Frequently, caregiving responsibilities restrict caregivers' spatial and temporal range of restorative activities to their familial residential environment. In a first attempt to explore the restorative potential of a house in which caregiving occurs, this paper reports experiential attributes of restorative environments from environmental psychology and healthcare design research. It discusses the relevance of restorative attributes to the socio–physical residential context of caregiving using three caregiver needs: need for a temporary escape, meaningful social support, and a sense of control. This conceptual exploration of the restorative potential of the residential caregiving environment offers a base for investigating targeted architectural and functional interventions that might complement current advances in home modifications and respite services.     

Dementia Problem Behavior and the Production of Informal Caregiving Services

Informal caregivers of individuals with Alzheimer's disease spend a considerable amount of time providing care. In this paper, we use Grossman's health production and Becker's time allocation models to develop a model of informal care provision to elderly dementia patients. In our model, time inputs produce caregiving services, which provides utility to the caregiver, but reduces leisure. We assume that time is less productive of services on the margin as the disease progresses. In this framework, an increase in patients' disease severity does not necessarily increase informal caregiver time input. The cost of formal care establishes a reservation price for informal caregiving. When the costs of informal caregiving rise above this reservation level, the patient is institutionalized. We test empirically the effect of deterioration in the patients' condition, proxied by both disease severity and dementia problem behavior, on informal caregiving time. We find that dementia-related problem behaviors and functional limitations significantly increase inputs of informal caregiving time. Patients' problem behavior exerts a modifying effect on functional limitations, and patients' comorbidities have no effect on informal caregiving time.     

Economic distress and mental health: The role of family coping resources and behaviors

Relationships among economic distress, family coping resources and behaviors, and mental health are examined among a sample of 203 married men and 207 married women. Economic distress is negatively associated with mental health. Although family coping resources are lower among those experiencing economic distress and are generally positively related to mental health, their role as mediators of relationships between economic distress and mental health is limited. Economic distress is positively related to family coping behaviors. However, these behaviors do not have positive relationships with mental health and do not counteract the effects of economic distress on mental health. Some coping resources and behaviors have buffering effects on relationships between economic distress and mental health while others have exacerbating effects.This article is a revision of a paper presented at the annual meeting of the American Sociological Association, August, 1986. The research was supported by grant 84–164 from the Office of Program Evaluation and Research, Ohio Department of Mental Health. Additional support was provided by the Office of Computing Activities, University of Dayton.Patricia Voydanoff is Director of the Center for the Study of Family Development, University of Dayton. Dr. Voydanoff holds a Ph.D. in Sociology from Wayne State University. Her research interests include work and family life and coping with economic distress.Brenda W. Donnelly is a Research Associate at the Center for the Study of Family Development, University of Dayton. Dr. Donnelly received her Ph.D. from the University of Delaware. She is currently conducting research on adolescent childbearing and religion and family life.     

Work and family: Understanding men's role evaluations

Analysis of data provided by a random sample (N=92) of married police officers was used to evaluate the effects of time constraints, job stress, family strengths, family structure, and social networks on men's role evaluations. These men had generally positive evaluations of their income provider, husband, father, and home care roles. Multivariate analysis showed complex relationships between work, family, and network conditions and men's evaluations of their roles. Commuting time, job stress, family strengths, number of children, kin available, friends available and contact with friends effected role evaluations. The centrality of family roles for these men and the patterns of personal gain they received did not support stereotypic images of men's family relationships.This is a revised version of a paper presented at the Annual Meeting of the National Council on Family Relations, November, 1985. I wish to thank Kuo-Liang Lin for his able assistance, and Robert A. Lewis and Fred Piercy for their helpful comments.Karen Altergott received her doctorate in Sociology from the University of Minnesota, and is currently Assistant Professor of Family Studies at Purdue University. Areas of research include family relations and social networks across the life course, comparative family studies, and family gerontology. Send correspondence to Dr. Altergott at Family Research Institute, 525 Russell Street, West Lafayette, IN 47907.     

Children's time in structured and unstructured leisure activities

Using the 1981 Time Use Longitudinal Panel Study data, this study examines factors which influence children's time use in leisure activities. More time is spent in unstructured than structured leisure activities. Analysis of variance is performed on 32 categories of leisure time, including total leisure, to determine the influence of characteristics of the child and the mother and other socioeconomic characteristics. Males spend significantly more time than females in active sports, playing games, and passive leisure especially watching television on weekends. Females spend significantly more time than males socializing on weekends. The amount of time spent socializing increases with age but decreases with employment. Time spent playing games decreases with age, increases with number of children, and decreases as family income increases. Given the large number of children who do not participate in a given set of leisure activities, future research should examine the probability of participation.The data used in this article were made available by the Inter-university Consortium for Political and Social Research. The data for Time Use Longitudinal Panel Study, 1975–1981 were originally collected by F. Thomas Juster, Martha S. Hill, Frank P. Stafford, and Jacquelynne Eccles Parsons of the Survey Research Center, Institute for Social Research, The University of Michigan. Neither the collector of the original data nor the Consortium bear any responsibility for the analysis or interpretation presented here.Carol B. Meeks is a Professor and Teresa Mauldin is an Assistant Professor in the Department of Housing and Consumer Economics, The University of Georgia, Athens, GA 30602. Dr. Meeks' research interests include time use, family structure, and economic aspects of housing. She received her Ph.D. from Ohio State University. Dr. Mauldin, who also received her Ph.D. from Ohio State University, is interested in time use, economic well being of individuals and families, and family structure.     

The health effects of caregiving by grandparents in Taiwan: an instrumental variable estimation

Previous research on the health effects of caring for grandchildren has had variable findings, including both positive and negative effects on the health of grandparents. The estimated effects of caregiving may be affected by selection, with the health of grandparent affecting the likelihood of undertaking caregiving. The health effects of caregiving also likely differ according to the cultural motivations for caregiving by grandparents. This paper assesses whether selection into caring for grandchildren affects the estimated effects of caregiving on the health of Taiwanese grandparents. We used four waves (1993?C2003) of the Survey of Health and Living Status of the Elderly in Taiwan to estimate the effect of grandparent caregiving on self-rated health, mobility, and depression. To control for unobserved selection into caregiving, we employed time-varying instrumental variables (the number of grandchildren and marital status of adult children) in addition to person fixed effects. After adjusting for baseline differences, caregivers had better self-rated health, fewer mobility limitations, and fewer depressive symptoms compared to the non-caregivers, which suggest evidence of health improvement for grandparents. Instrumental variable analysis showed that caring for grandchildren was endogenously determined with grandparents?? mobility limitations, and grandparent caregivers benefited from a significant reduction in the number of mobility limitations. Our finding suggests that caring for grandchildren can be beneficial for the health of Taiwanese grandparents and supports our hypothesis that a culturally expected role of caregiving results in role enhancement.     

Family support in late life: A review of the literature on aging,disability, and family caregiving

ABSTRACT

For older adults and people with disabilities in the United States, family caregiving is an important part of remaining at home and in the community. As care recipients and caregivers age, family dynamics change, and the health, social, and financial impacts of this (largely unremunerated) work have implications for individuals, families, and social policy. In this review, the authors map the literature across multiple fields related to disability and aging to understand caregiving in late life, what it means to be an older caregiver and/or to care for older people. The authors summarize the findings of 97 articles to address the care, services, and supports family caregivers provide for older adults; negative and positive impacts for caregivers serving in this role; supports that family members use or need; and societal impact of family caregiving. Much of the literature describes the work family caregivers provide and negative impacts of caregiving. Less attention is devoted to caregiving benefits, supports used by family caregivers, and societal impacts. The authors conclude with an agenda for future research that attends to the need for research that includes: more diverse samples, new types of caregivers, longitudinal data, qualitative data and analysis, and comparative research.     

Faculty in the Middle

This study was designed to explore how organizational life in university-affiliated graduate social work education programs in the United States is affected by the stress of heightened caregiving roles. Analysis of data from 69 schools demonstrated deleterious effects of caregiving stress on organizational effectiveness, including missed obligations, feeling overwhelmed, and distracting others by seeking social support for specific problems. The authors identify two variables that provided partial amelioration of caregiver stress and appeared to contribute to increased organizational effectiveness: larger faculty size and on-site child care.     

Positive youth development within a family leisure context: youth perspectives of family outcomes

Although a variety of recreation programs provide valuable settings for youth development and should continue, the home should be considered the first and perhaps the most essential context for positive youth development. Family leisure experiences are purposively or intentionally planned by invested adults (parents) to create and maintain meaningful relationships and provide supportive opportunities for their children to learn skills and develop behaviors that will not only strengthen current family life but ultimately contribute to their overall positive development. The article presents family leisure research from a youth perspective and sets out the implications of the role of home-based core types of leisure that families engage in.     

Lesbian,gay, bisexual,and transgender families and health

Research consistently demonstrates that family relationships are key determinants of health, but most research on health and families focuses on a heterosexual and cisgender context. Sexual and gender identities often are overlooked or erased in family and health research. We present an overview of the current state of research on LGBT families and health, using a life course approach and pointing to the ways that LGBT people's experiences of families occur within a broader social structural context, with implications for their health and the health of their family members. We focus on parenthood, parent–child ties, intimate relationships, and caregiving. We also identify two theoretical obstacles for studies of LGBT families and health as well as important research areas for moving forward, such as the inclusion of non‐binary and queer identities in our studies of family and health. Incorporation of LGBT and other queer families and family forms into our health research interrogates assumptions within family and health research and offers insight into how to move the field forward.     

Informal Caregiving: Dilemmas of Sandwiched Caregivers

Increased demand will intensify pressures for informal caregiving, especially for sandwiched caregivers. Using 1999, National Long Term Care Survey data, we contrasted socio-demographic statistics, care environments, activities of daily living (ADL) and instrumental activities of daily living (IADL) assistance, life quality, and employment burden of sandwiched versus non-sandwiched parental caregivers. Regression analysis explored variables influencing caregiving hours, employment accommodation, stress, strain, time for self, social life limits, free time, and excess burden. We found no differences in caregiving hours, no greater labor force accommodation, but lower quality of life among sandwiched caregivers with more than they can handle, but they undertook parent care despite quality of life reduction. Uniquely, the research indicates sandwiched caregivers’ employment mitigates stress, strain, and burden and supports policy changes providing more supportive workplace environments.