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There is continued attention in Disability Studies and other disciplines to the concept of women's work. Women do the majority of the day-to-day care of people with disabilities, including personal care, community care and inclusion, work in human service fields, and in friendships; yet for the most part, their efforts go unnoticed. Far too often, the work that women do is understood as natural, or as an inherent part of being a woman. However, this research demonstrates that women as caregivers is not a role that comes naturally for women, it is negotiated and maintained by social interactions. This social construction of women as caregivers continues throughout their lives, and has powerful consequences on the way that their work is understood. 

Included here are discussions by women with disabilities who argue that the person being cared for is often left out of the discussions of caring and caring relationships, and that this subject needs immediate attention. These writers assert that the conversation in this area should be located around equitable relationships between the women who care and the women who are being cared for. 

Also now relevant is the affect of culture on women’s care work as well as having a child with a disability. Additional research now focuses on the affects of informal care work on women’s employment, health and self-esteem as well as women who are not only caring for their children but also their aging parents.

Abel, E. K (2000). Hearts of wisdom: American women caring for kin, 1850-1940. Cambridge: Harvard University Press.

The image of the female caregiver holding a midnight vigil at the bedside of a sick relative is so firmly rooted in our collective imagination we might assume that such caregiving would have attracted the scrutiny of numerous historians. As Emily Abel demonstrates in this groundbreaking study of caregiving in America across class and ethnic divides and over the course of ninety years, this has hardly been the case.

While caring for sick and disabled family members was commonplace for women in nineteenth- and early-twentieth-century America, that caregiving, the caregivers' experience of it, and the medical profession's reaction to it took diverse and sometimes unexpected forms. A complex series of historical changes, Abel shows, has profoundly altered the content and cultural meaning of care. Hearts of Wisdom is an immersion into that "world of care." Drawing on antebellum slave narratives, white farm women's diaries, and public health records, Abel puts together a multifaceted picture of what caregiving meant to American women--and what it cost them--from the pre-Civil War years to the brink of America's entry into the Second World War. She shows that caregiving offered women an arena in which experience could be parlayed into expertise, while at the same time the revolution in bacteriology and the transformation of the formal health care system were weakening women's claim to that expertise.

An excerpt can be read online at:  

Allen, J. (1993). Caring work and gender equity in an aging society. In J. Allen, & A. Pifer (Eds.), Women on the front lines: Meeting the challenges of an aging America. Washington, DC: The Urban Institute Press.

The author discusses how different aspects of the demand for care for elderly people might promote or hinder the integration of family care with paid employment and of caring work between men and women. Allen argues that without significant policy changes, the growing number of elderly people who need care will place an additional burden on women, who do the majority of the caring work. These women may have to sacrifice job earnings and health insurance, among other things, in order to care for elderly family members. The author outlines two proposed reforms in terms of gender equity issues, expanding paid home care, and creating government mandates for job leaves for family care.

Arber, S., & Ginn, J. (1995). Gender differences in the relationship between paid employment and informal care. Work, Employment & Society, 9(3), 445-471.

This paper analyses the circumstances under which providing informal care has an adverse impact on paid employment, using data from the 1990 General Household Survey which identified 2,700 informal carers. The relationship between informal caring and employment participation is complex and differs by gender and marital status. Paid employment is lowered for adults providing care within their household. The effect is greater for women than for men, and varies with the closeness of the kin relationship between carer and care-recipient. Women caring for a handicapped child are least likely to be in full-time work. Care for a spouse depresses both men's and women's employment. The effect of caring for a co-resident parent is least for married men and greatest for married women. The assumption that women's increased labour force participation will reduce their availability as informal carers for elderly parents is largely unfounded. This care is mainly for elderly parents living in another household, and is associated with reduced hours of employment but not lower overall rates of employment. The norm of combining paid work and informal caring results in very high total hours of informal and paid work.

Arias, R. (1994, December). Groupwork with women who have a child with a developmental disability. Australian Social Work, 47(4), 37-42.

The purpose of this study is to show how groupwork with a feminist approach can be an effective and empowering form of intervention for women who are mothers of a child with a developmental disability. Women are usually the primary carers and are often isolated with no one to share their thoughts, feelings, and concerns. A group provides an opportunity to bring some of these women together to share their experiences and offer each other emotional support, feedback, and practical help. The content of the group looks at issues related to women in general as well l as specific issues related to disability.

Aronson, J. (2000, Fall). Missing voices in long-term care policy making: Elderly women and women with disabilities receiving home care. Centres for Excellence in Women’s Health Research Bulletin, 1(1), 14-15. Ottawa, Ontario: Centres of Excellence for Women’s Health Program and Research, Women’s Health Bureau. Retrieved March 18, 2005 from  

“This study explores the perspectives and aspirations of frail elderly women and younger women with disabilities who rely on care and assistance at home in Ontario. Their voices and their knowledge of the home care system are seldom included in current debates about long-term care policies that are, rather, dominated by the economically-driven imperatives of governments to manage efficiently and offload costs from the public ledger.”

This story is in the inaugural issue of the Centres of Excellence’s newsletter, focusing on a range of issues on women’s health. A full copy of the bulletin can be found at

Baines, C. T., Evans, P. M., & Neysmith, S. M. (Eds.). (1998). Women's caring: Feminist perspectives on social welfare (2nd ed.). London: Oxford University Press

"Most caring work in our society is done by women. This work is often hidden in the roles of mothers, daughters, and wives and is undervalued outside the home as women work in the community as volunteers, in the 'caring' professions, and in low-wage jobs in hospitals, childcare centers, and homemaking services. In the second edition of Women's Caring, a groundbreaking feminist perspective on social welfare in Canada, the editors and their contributors have added three new chapters - on women of color, women abused in intimate relationships, and Canada's live-in caregiver policy. As well, the entire book has been widely updated and revised to reflect the changed legal, political, and policy context and the growing literature on the formal paid and informal unpaid caring work that women perform."

Bedini, L. A., & Guinan, D. M. (1995, October). Motherhood revisited?: Recurring roles of family caregivers and their relationship to leisure. Paper presented at The 1995 Leisure Research Symposium, San Antonio, TX.

Research about understanding the leisure of women, particularly those in unique family and social roles such as mothers or single parents, is growing. Women who pursue the less defined roles of informal (unpaid) family caregivers for older adult members, however, are an under-researched group…. The purpose of this study was to examine the leisure of women who are informal family caregivers for older adult members from a life span/life stage perspective. Specifically, the responsibilities inherent in caregiving for an older family member were addressed regarding the concept of recurring roles and their impact on leisure.

Boeije, H. R., & Van Doorne-Huiskes, A. (2003, December). Fulfilling a sense of duty: How men and women giving care to spouses with multiple sclerosis interpret this role. Community, Work & Family, 6(3), 223-244.

This qualitative study examines how spouses experience caregiving when predominantly motivated by a sense of duty & addresses whether any differences between female & male caregivers can be detected. For our purpose semi-structured interviews were conducted with eight male & five female caregivers providing total care to their spouses who are disabled as a result of multiple sclerosis (MS). The analysis consisted of fragmenting & connecting the data & involved close reading & constant comparison. Participants involved in this study maintain caregiving despite the unfavorable changes they have noticed in their relationships. They interpret caregiving as something they just have to do. Males & females develop different perspectives on caregiving that are illustrated by two exemplary case stories that can be summarized respectively in the phrase 'You have to be satisfied with it,' & as 'I have to become harder & less self-sacrificing.' Explanations for these outcomes are sought in differences in moral orientations between women & men & in gender differences regarding their feelings of duty & rights. The results shed light on previous findings that female caregivers report more stress than male caregivers & as such pertain on the discussion on home health care.

Boyle, J. S., Bunting, S. M., Hodnicki, D. R., & Ferrell, J. A. (2001). Critical thinking in African American mothers who care for adult children with HIV: A cultural analysis. Journal of Transcultural Nursing, 12(3), 193-202.

This research study defines critical thinking in nursing and examines the thinking processes revealed by 15 African American mothers who are caregivers to adult children with HIV. The purpose of this cultural analysis was to compare the mothers' decision-making processes with their critical-thinking processes. Their culture, heritage, faith, and value of family influenced caregivers in this study. Their testimony revealed the patterns of creating a different path of care, weaving together resources, choosing among negative alternatives, and selecting stories to tell. Mothers' decisions were based on complex and holistic knowledge of their situations and culture and could be termed multilogical, a type of thinking considered necessary for managing complex situations. Health providers can benefit from an understanding of these decision-making processes.

Brody, E. M. (2003). Women in the middle: Their parent-care years (2nd ed.) [Spring Series of Life Styles and Issues in Aging]. New York: Springer Publishing Co.

"Women in the middle" were so-named because daughters, who are the main caregivers to elderly disabled parents, most often in their middle years, are caught in the middle of multiple competing demands on their time and energy. Since the first edition, women's responsibilities and the pressures they have experienced have increased and intensified. Dr. Brody revisits this phenomenon in this new, updated edition of her ground-breaking work.

Women in the Middle describes and discusses the caregiving women's subjective feelings, experiences, and problems, and the effects on their mental and physical well-being, life styles, family relationships, and vocational activities. These case studies and narratives present an insider's view of the harsh and sometimes joyful experience of caregiving.

Special attention is given to the changing face of social, economic, and environmental conditions, as well as the diversity of the caregiver, in which caregiving, in which caregiving takes place.

Brookes, A. (2001, June). Women's voices: Prenatal diagnosis and care for the disabled. Health Care Analysis, 9(2), 133-150.

The development and implementation of prenatal diagnosis has changed the experience of pregnancy for many women. How women make decisions about prenatal diagnosis PD is an important question that challenges us both individually and as a community. The question of care is central to many women's decision-making process. How much care a child will require, how much care a woman feels confident to provide, and the level of care available for children with genetic conditions and families from their communities all impact on women's decisions to undertake prenatal diagnosis as well as how to use the information available from testing. Interviews with women making these decisions explored, among other things, the role that caring and access to care played in women's ethical deliberations. Before PD can widen women's reproductive choices and counter criticisms that its use is eugenically oriented, the central role that provision of, and access to, care holds for participants in PD programmes must be acknowledged and addressed.

Bunting, S. M. (2001, January-February). Sustaining the relationship: Women's caregiving in the context of HIV disease. Health Care for Women International, 22(1-2), 131-148.

In North America and throughout the world the number of persons living with human immunodeficiency virus (HIV [PLWH]) continues to increase. Before the recent discoveries of effective antiviral treatments that have given hope to families of PLWH, acquired immune deficiency syndrome (AIDS) was looked upon as a disease that was a virtual death sentence to those who were infected. The symptoms and opportunistic infections associated with AIDS are varied and debilitating, and PLWH require intensive and prolonged care during their many illnesses and rigorous treatments. As medical breakthroughs have prolonged the lives of the infected persons, the complicated regimens of the treatments and the physical effects of both treatment and disease continue to require the support and caregiving of family members. As is so often the case with caregiving, the tasks of caring for the men, women, and children with AIDS have been taken on in many cases by the women in their lives: their mothers, sisters, aunts, and other family members. In this study I used the grounded theory method to generate a substantive theory of women's caregiving in the context of AIDS. The primary process for collection of data in this study was interviewing participants. In-depth interviews were conducted with 9 women who ranged in age from 28 to 65. Three of the women had AIDS and were also caregivers, 3 other caregiving women were sisters, and 3 were mothers of PLWH. Five of the informants were White and 4 were African American. The basic social psychological process (BSPP) that emerged from the analysis of the data was sustaining the relationship. In this study, role transition, managing behavior, reciprocal caring, balancing independence, and managing distance were categories of the BSPP, "sustaining the relationship" as women engaged in the intricate processes of caregiving. These were overlapping and interacting processes that women used to nurture and preserve not only the object of their care, the person with HIV, but also that person's relationships with her or his significant others, including the relationship with the caregiver. In this article, relationships between categories are illustrated with quotations from the data. Implications for future research and for clinical practice are discussed.

Climo, J. J. (2000). Eldercare as "woman's work" in poor countries. Journal of Family Issues, 21(6), 692-713.

This article explores gender and eldercare by examining four issues concerning the activities of women giving and receiving eldercare: (a) the need for an ethnographic and comparative focus; (b) some important differences between poor and rich countries in the structure of eldercare and in eldercare roles for women; (c) continuity and change in the role of women as caregivers and care receivers, women empowered and women in need; and (d) family structures for eldercare focusing on the tensions surrounding cultural principles and circumstances governing caregiver selection. The discussion calls for more research concerning the actual and potential roles of both women and men in eldercare. Women who provide eldercare in most poor countries would benefit from extrafamilial health care, services, and material resources that alleviate poverty as well as from improved education, whereas men in most countries will continue to avoid eldercare as long as it is regarded as "woman's work."

Cohen, P. N., & Petrescu-Prahova, M. (2003, December 12). Care work, gender inequality and the state: Women's employment and children with disabilities. Paper presented at CRF Seminar Series 2003-2004, The Center for Research on Families, University of California, Irvine, Irvine, CA. Retrieved March 8, 2005 from

Despite the deinstitutionalization of people with disabilities in the U.S.A., much of the care for children with disabilities is performed at home, where care work is largely women's work. Thus, the gender division of labor in the care for children with disabilities, in the absence of greater institutional or state support, is one mechanism for the reproduction of gender inequality more broadly. Using new data on disabilities from the 2000 Decennial Census, we test for an association between the presence of children with disabilities and the division of paid work between husbands and wives. The results are consistent with other evidence that when care work is to be done within families, it falls disproportionately to women--undermining women's career mobility and contributing to gender inequality in the labor market as well as within families.

Cohen, P. N., & Petrescu-Prahova, M. (2005, February 1). Gendered living arrangements among children with disabilities: Evidence from the 2000 census. Paper presented at Sociology 997: Demography and Ecology Training Seminar, University of Wisconsin Center for Demography and Ecology, Madison, WI. Retrieved March 8, 2005 from  

Previous research shows that mothers are largely responsible for the care of children with disabilities in married couples. But many children with disabilities do not live with married couples. Using data on disabilities from the 2000 Census, we find a consistent pattern of living arrangements that leaves children with disabilities disproportionately under the roofs of their mothers or other women. Children with disabilities are more likely to live with single parents, and especially their mothers, than are other children. Further, those who do not live with either parent are more likely to live in households headed by women than are other children. We argue that gendered living arrangements among children with disabilities are a neglected aspect of inequality in caring labor, which is an underpinning of gender inequality in general.

The Commonwealth Fund. (1999, May). Informal caregiving. New York: Author. Retrieved March 10, 2005 from

This is a fact sheet summarizing The Commonwealth Fund 1998 Survey of Women’s Health. The survey probed the extent of women’s caregiving roles, enabling comparisons by income, health, and access to health care. The survey finds that although women across all income groups are almost as likely to fill a caregiving role, lower-income caregivers are less likely to have opportunities for a respite from their responsibilities. Also, overall, women caregivers themselves are often in need of care: they report relatively high rates of poor health, disability, and depression.

Cushing, P., & Lewis, T. (2002). Negotiating mutuality and agency in care-giving relationships with women with intellectual disabilities. In E. Kittay, S. Silvers, & S. Wendell (Eds.), Special issue: Feminism and disability II. Hypatia, 17(3), 173-193.

This article is an ethnographic analysis of the mutuality that is possible in relationships between caregivers and women with intellectual disabilities who live together in L'Arche homes. Creating mutuality through which both parties grow and exercise agency requires that caregivers learn to negotiate delicate power relations connected to the physics of care and to reframe dominant stereotypes of disability. This helps them to support the women with intellectual disabilities to name and achieve their desires.

Davis, C. (2002). I knew a woman: Four women patients and their female caregiver. New York: Ballantine Books.

"I cannot ignore the reality of the body, its glorious beginnings and its subtle endings," writes Cortney Davis in this intimate and startlingly original account of her work at a women's clinic. A poet and nurse-practitioner with twenty five years' experience, Davis reveals the beauty of the body's workings by unfolding the lives of four patients who struggle with its natural cycles and unexpected surprises: pregnancy and childbirth, illness and recovery, sexual dysfunction and sexual joy. An abundance of solid medical information imbues every graceful line.

Davis's eternal question to herself is: How do you help someone to not merely survive but flourish? In this compassionate and expansive book, she provides a template. I Knew a Woman will alter your perception of the humanity of medicine and the ordinary miracle of our physical selves.

Dentinger, E., & Clarkberg, M. (2002). Informal caregiving and retirement timing among men and women: Gender and caregiving relationships in late midlife. Journal of Family Issues, 23(7), 857-879.

Informal caregiving, or the provision of unpaid, voluntary care to elderly or disabled family and friends, is an increasingly common experience for both men and women in late midlife. The authors examine the ways in which informal caregiving influences the transition to retirement and how this relationship is shaped by gender. Our data are 763 pension-eligible men and women in the 1994-1995 Cornell Retirement and Well-Being Study. Results from discrete-time event history analyses indicate that certain types of caregiving shape the timing of retirement but that the association depends on the relationship between caregiver and care recipient and is fundamentally moderated by gender. For example, wives caring for their husbands have retirement odds 5 times greater than women who are not caregivers, whereas husbands caring for their wives are substantially slower to retire. Our evidence suggests that in this sample, caregiving responsibilities lead to increased sex role-typical employment behavior in late midlife.

Empowering women with disabilities to pursue healthy lifestyles [Feature issue]. (2003, Fall). The Women’s Center at Premier HealthCare Newsletter, 3(1). New York: The Women’s Center at Premier Health Care, National Institute for People with Disabilities, Young Adult Institute.

This issue of The Women's Center Newsletter focuses on a range of caregiving issues for women with disabilities.

Family Caregiver Alliance, National Center on Caregiving. (2003, May). Women and caregiving: Facts and figures. San Francisco: Author. Retrieved March 9, 2005 from

Brief fact sheet on women and caregiving, providing information on who provides care; long-term care needs of women; women, work and caregiving; the health consequences of women’s caregiving; minority and low-income caregivers; support systems for women caregivers; and a short list of resources.

Fine, M. (2005, October). Dependency work: A critical exploration of Kittay's perspective on care as a relationship of power. Health Sociology Review, 14(2), 146-160.

The emergence of a specialised field of care research is a relatively recent development, owing much to feminist scholarship and the increasing prevalence of women in the public domain. This paper briefly outlines two of the most influential approaches to the more general field of care research, comparing them with research on professional relationships in formal health care settings. While gender operates as an explanatory factor in each of these approaches, issues of power and domination, which feature strongly in the health sociology literature, are largely avoided in the research on care. Kittay's approach to the theory and analysis of care is a notable exception. Using her recent work as a central focus, this paper explores the social position of care givers and receivers. Examining the nature of power within and surrounding care relationships, Kittay makes an important distinction between the inequality of power and the exertion of domination. Her argument has much to offer sociological research in the field of care, but her avoidance, and at times, confusing use of the concept of 'care', and of the terms 'power' and 'dependency', present some difficulties. To clarify the potential of her contribution, a critique is offered which compares her approach to the analyses of power by Lukes and Foucault.

Folbre, N., Shaw, L. B., & Stark, A. (Eds.). (2005, July). Special issue on gender and aging. Feminist Economics, 11(2).

This volume focuses on gendered differences in the economic resources of the elderly and the individuals charged with meeting the day-to-day care needs of the elderly. Often the burden of care falls on women, who themselves have less access to care as they age. The introduction gives an overview of the public policy initiatives, social insurance and welfare programs, and family provisions for care that are thoroughly examined in the following contributions. The volume highlights both cross-national contrasts and common challenges to meeting the economic and care needs of the growing elderly population.

Forbat, L. (2003). Relationship difficulties in dementia care: A discursive analysis of two women's accounts. Dementia, 2(1), 67-84.

This article reports on a small-scale study where people giving and receiving care were invited to talk about their relationship. It draws on one care dyad of a woman (who has a diagnosis of dementia) and her daughter (who has provided care for her mother). A short series of interviews was conducted with both women, focusing on their biographies and current relationship. This article reports the account given by the mother and how this intersects with the account given by the daughter. The discursive analysis presented centralizes a concern with attending to the accounts of people with dementia. Analysis of the talk of people with dementia can make a valuable contribution to understanding care relationships. Such analysis has the potential for shedding light on difficulties in care relationships. The article ends by outlining some salient issues for professionals and family members involved in dementia care.

Foster, S. E., & Brizius, J. (1993). Caregiving too much? American women and the nation's caregiving crisis. In J. Allen, & A Pifer (Eds.), Women on the front lines: Meeting the challenges of an aging American. Washington, DC: The Urban Institute Press.

The authors of this chapter respond to what they consider a "crisis of caregiving." This crisis stems from the fact that women spend more time than men caring for an elderly parent or an elderly spouse (about 80% of women do the caregiving). The majority of these women are also in the workforce, which means that essentially have two jobs, one caregiving and one at work. These changes in women's lives have resulted in financial, emotional, and physical stress for women. The authors suggest ways in which public policy can help alleviate this crisis. They suggest numerous financial changes and preventative measures. They also argue that services for caregivers need to be expanded and they encourage men to take more responsibility for caregiving.

Grant, K. R., Amaratunga, C., Armstrong, P., Boscoe, M., Pederson, A., & Willson, K. (Eds.). (2004). Caring for/caring about: Women, home care and unpaid caregiving [Health Care in Canada Series]. Aurora, ON: Garamond Press.

The Canadian health care system is undergoing steady change, but one thing that remains constant is the key role that women play in providing care. Women are estimated to be comprise nearly 80% of both the paid and unpaid care workers in this country. Yet, their numbers do not coincide with their influence. Government reforms such as the introduction of market systems in health care may result in some cost efficiencies, but not necessarily better working conditions for those who care, much less better care for those who need it. Similarly, the increasing transfer of patients into community care may mean that individuals are able to convalesce in more familiar surroundings and with the people they love, but the added burden on family members—usually women—may mean forgone paid work, not to mention changes in personal relationships between those who care and those who are cared for and about.

Gross, R., Brammli-Greenberg, S., & Bentur, N. (2003). Women caring for disabled parents and other relatives: Implications for social workers in the health services. Social Work in Health Care, 37(4), 19–37.

Caring for an ill or disabled relative is a life experience shared by many women. Based on data from a representative sample of women in Israel, this study examined the demographic, employment, and health characteristics of women caregivers, focusing on the extent of care provided and its effect on the caregiver's physical and mental health. Using the conceptual framework of caregiving-related stress, we compared women who care for a parent, and women who care for another relative. The study found more instrumental difficulties, which lead to greater burden, among women who care for a disabled relative who is not a parent. Furthermore, larger proportions of women caring for a disabled relative who is not a parent report depressive mood symptoms, poor health status, and the need for psychological counseling. The findings suggest that formal service providers, chiefly social workers, may better support women caregivers once they are aware of the needs arising from disparate contexts of care.

Guberman, N. (2003). Remuneration for the care of the disabled: The stakes for women. Nouvelles Pratiques Sociales, 16(1), 186-206.

This article tackles the question of payment for the care assumed by family & friends of persons with disabilities. It is organized around a series of theoretical reframings & premises which avoid the trap of traditional dichotomizing between public & private, family space & cultural space. By proposing care as a right of citizenship, it offers a third area of reflection that opens the door to a social debate on this question that is determinant with regard to the situation of women.

Henderson, J. (2001, November). "He's not my carer--he's my husband': Personal and policy constructions of care in mental health. Journal of Social Work Practice, 15(2), 149-159.

The construction of 'care' in the professional and UK legislative and policy arenas has been the focus of much interest in recent years. A growing awareness of the needs of 'carers' in their own right and a recognition of the conflicting needs of 'carers' and users of services informs practice in health and social care where discourses of care focus on 'care' as duty, burden and responsibility. The complexity of the roles and tasks that make up the lived experience of someone who 'cares; for and about another is well documented, especially in the areas of older people and physical disability. This paper seeks to locate individual experiences of 'care' in mental health alongside the construction of 'care' in mental health policy and legislation within the UK. The paper draws both on preliminary research with couples, and an analysis of the development of 'care' in policy and law. This dual analysis indicates that, while practitioners in health and social care recognize the needs of people who consider themselves to be 'carers', not all people subscribe to the identity of 'carer' or 'cared for' in their relationship.

Heller, T., Hsieh, K., & Rowitz, L. (1997, October). Maternal and paternal caregiving of persons with mental retardation across the lifespan. Family Relations, 46(4), 407-415.

The study compared the objective (time demands and support provided) and subjective dimensions (caregiving burden) of caregiving for fathers and mothers of children and adults with mental retardation living in the family home and in other settings. Also, it examined the extent that characteristics of the child and family and time commitments of both parents affected these outcomes. In comparison with fathers, mothers spent more time providing care, offered more types of support, and perceived more caregiving burden. For both parents out-of-home placement of adults, but not children, was associated with less caregiving burden. The behaviors and health of the offspring had a greater impact on mothers than on fathers. The effects of their own time commitments and their spouse's time commitments on their caregiving experience differed for mothers and fathers.

Herd, P., & Meyer, M. H. (2002). Care work: Invisible civic engagement. Gender & Society, 16(5), 665-688.

Scholars who debate the cause of and solutions for the decline in civic engagement have suggested that Americans have increasingly withdrawn from community organizations, reducing their political activity such as voting and interest in the political world, and generally failing to place the common good over individual self-interest. Their analyses are steeped in a tradition that is largely gender blind and consequently ignores care work. We infuse feminist analyses of paid labor and citizenship, which emphasize the merits and burdens of care work, into the civic engagement debate. We argue that care work, predominantly performed by women, paradoxically limits, enhances, and even constitutes a vital form of civic activity. We call for a fuller slate of social policies that will both redistribute the burden of care work and reinvigorate civic engagement.

Hillyer, B. (1993). Caregivers and difference. In B. Hillyer, Feminism and disability (pp. 176-192). Norman, OK: University of Oklahoma Press.

This chapter of Feminism and Disability focuses on three main issues around caregiving. Hillyer explores the relationship of caregiving to women's role conditioning, to class barriers between caregivers, and to using caregiving networks to further explore feminist discussion of difference. She discusses how women have been conditioned to be caregivers and encouraged to be self-sacrificing, and that feminist discourse needs to challenge these assumptions.

She further asserts that class and status play a role in women's caregiving. She argues that numerous caregivers are in financially difficult situations (either because they have given up their jobs to become caregivers or because they are paid caregivers in the low income range) and that these paid caregivers are often from ethnic minorities. These factors are usually different from the women they care for, and therefore ethnic minorities or women from lower incomes are not seen as valued in a caregiving situation. They are not in the discussions around caring and what is best for the person being cared for. In addition, these women are silenced in the sense that their stories and experiences do not easily cross class and status boundaries, thereby making it difficult for the carer and the person being cared for to understand each other.

To help deal with this dilemma, Hillyer argues that caregiving networks can be used to explore the feminist discussion difference. She feels that it is crucial to be able to listen to other women caregivers' stories and to value these experiences. This in turn could lead to consciousness raising groups and political action.

Hoffman, D. (1993). Complaints of a dutiful daughter [Film]. New York: Women Make Movies.

With profound insight and a healthy dose of levity, Complaints of a Dutiful Daughter chronicles the various stages of a mother's Alzheimer's Disease and the evolution of a daughter's response to the illness. The desire to cure the incurable-to set right her mother's confusion and forgetfulness, to temper her mother's obsessiveness-gives way to an acceptance which is finally liberating for both daughter and mother. Neither depressing nor medical, Complaints of a Dutiful Daughter is much more than a story about Alzheimer's and family caregiving. It is ultimately a life-affirming exploration of family relations, aging and change, the meaning of memory, and love.

Hooyman, N. R., & Gonyea, J. (1995). Feminist perspectives of family care: Policies for gender justice. Newbury Park, CA: Sage Publications.

Hooyman and Gonyea critically examine the act of caregiving through a feminist perspective. Given that over 75% of care provided to family members is provided by women, the authors analyze the impact of this caring on women's economical, social, and personal experiences. Furthermore, they examine how changing economic structures, changing families, and the changing workforce have affected the lives of women who provide care. The authors argue for structural changes in the economy, social institutions, and attitudes in order to improve the lives of women. Hooyman and Gonyea also explore the implications for social policy if caregiving is defined as a women's role and how current social policies are oppressive to women. Their recommendations for change includes workplace supports, health care and long term care policies, and economic and social supports for caregivers.

Hubbard, A. (2004, Fall). The myth of independence and the major life activity of caring. The Journal of Gender, Race & Justice, 327(8).

...In some respects, sex discrimination and disability discrimination are variations on a theme: same struggle, different difference. ...Feminist teachings about dependency needs and family caretaking responsibilities, along with feminism's success at creating public and political awareness of these issues, offer broader insights to challenge the social structures and cultural myths that perpetuate stereotypes and misconceptions about the concept and consequences of "disability." ...Existing legal understandings of major life activities are, at the very least, hospitable to recognizing caring (or "caregiving," "caretaking" or "care work") as a major life activity. ...Indeed, this is the crux of a claim of disability based on caretaking as a major life activity: my impairment is disabling because it limits me in the important activity of caring for someone I care about. ...We can applaud the Court's understanding of the gendered nature of caretaking but still wonder how it can be so dismissive in Garrett of a record of disability discrimination, yet so solicitous in Hibbs about alleged sex discrimination. ...Thus, as we step back from feminism's specific lessons about caring as a major life activity, we see other useful parallels in the struggles for sex and disability equality. ...

Isaksen, L. W. (2002). Toward a sociology of (gendered) disgust: Images of bodily decay and the social organization of care work. Journal of Family Issues, 23(7), 791-811.

Based on a reinterpretation of 105 relations between the elderly and their adult children, this article discusses incontinence as a social and cultural phenomenon. Social norms and cultural symbols that surround the intimate parts of the body affect the way care work is organized, gendered, culturally understood, and socially stratified. To lose bodily control over bodily fluids seems to put the individual's identity and human dignity at risk. The disturbing presence of odors, sights, and textures seems to have a disruptive effect on close relationships. The article further discusses how bodily dimensions of care add new burdens to modern family life in different social contexts and contribute to expand the gender gap in different cultures of care. This seems to be related to how ideas of individualism structure and are structured by economic and social conditions in which people live their everyday lives.

Katz, S. J., Kabeto, M., & Langa, K. M. (2000). Gender disparities in the receipt of home care for elderly people with disabilities in the United States. Journal of the American Medical Association (JAMA), 284(23), 3022-3027.

Study examining sex-based differences in receipt of informal and formal home care by older adults with disabilities. Data are from a nationally representative survey conducted in 1993 among 7443 noninstitutionalized people (4538 women and 2905 men) age 70 or older, of whom 3109 reported impairments in activities of daily living (ADL) or instrumental activities of daily living (IADL). Results show that women with disabilities received fewer hours of informal care than men with disabilities. Women with disabilities tended to receive care from children, while men with disabilities tended to receive care from wives. No significant differences were found in receipt of formal care.

Keith, L. (1992). Who cares wins? Women, caring, and disability. Disability, Handicap & Society, 7(2), 167-176.

Keith's article provides an argument for research which does not alienate disabled people while researching who cares for them. Too often, she asserts, feminist research on carers excludes the rights, power, and independence of disabled people and only depicts them as passive, helpless, and demanding. The author calls for the reconceptualization of research around the issue of care to make sure that all voices are represented, not only the voice of the person giving care. She offers as part of the solution the concept of citizenship and its affiliation with basic universal human rights as a way to fill this gap in research and in understanding the caring relationship.

King, A. C., Atienza, A., Castro, C., & Collins, R. (2002). Physiological and affective responses to family caregiving in the natural setting in wives versus daughters. International Journal of Behavioral Medicine, 9(3), 176-194.

This study examined differences in hemodynamic responses to usual caregiving duties undertaken in the natural setting by caregiving wives versus daughters. Participants were 88 women (36 daughters, 52 wives), 50 years of age or older, caring for a relative with dementia. Participants underwent 2 standard laboratory challenges (1 physical and 1 emotional) and ambulatory monitoring in the natural setting. Although wives and daughters showed similar physiological responses to the laboratory challenges, daughters evidenced greater hemodynamic responses in the natural setting relative to wives when the care recipient was present (p < .02). The increases in hemodynamic responses were accompanied by increased negative interactions with the care recipient as well as other family members (p < .0009). The results add to the small body of research indicating that family caregiving may have negative acute effects on psychosocial and physiological responses in the natural setting, particularly in daughters.

Kolomer, S. R., McCallion, P., & Janicki, M. P. (2002). African-American grandmother carers of children with disabilities: Predictors of depressive symptoms. Journal of Gerontological Social Work, 37(3/4), 45-63.

Estimates are that one in ten grandparents will take on the role of primary carer to a grandchild for at least six months before the child is age 18, including a child with a development delay or disability. This article reviews the current literature on grandparent caregiving with particular attention to African-American grandmother carers and discusses stressors and reports of elevated symptoms of depression among them. The demographics of a sample of 145 African-American grandmothers of children with a developmental disability are reported here as well as the result of a logistic regression analysis of a model of predictors of elevated (above a score of 16 on the CES-D) symptoms of depression. Being younger than age 60, not working outside of the home, not being married, and having no further than secondary school education, were all found to be significant predictors of elevated symptoms of depression in this sample of African-American grandmothers. Interventions for this group of carers must take into account their potential for depression and health problems, economic circumstances, and lack of knowledge of financial and other assistive resources.

Lee, C. (1999). Health, stress and coping among women caregivers: A review. Journal of Health Psychology, 4(1), 27-40.

Informal family-based care of dependent adults places a significant burden on caregivers. The impact of caregiving on subjective well-being, preventive behaviours, lifestyle and employment is well documented, and there is good evidence for increases in risk factors for serious illness, although evidence on actual incidence of major illness varies between studies. The individual-based focus of much research on this topic has tended to obscure the social and cultural forces underlying the fact that the majority of family caregivers are women, and to ignore the gender inequities which are perpetuated by an assumption that family caregiving is naturally the work of women. This article reviews evidence on the burden of caregiving, and argues for psychological research which addresses issues of public policy rather than the individual woman and her personal ability to cope.

Lee, C. (2001). Experiences of family caregiving among older Australian women. Journal of Health Psychology, 6(4), 393-404.

This article uses quantitative and qualitative methods to examine the effects of family caregiving on physical and emotional well-being, finances and leisure among a cohort of Australian women aged 70 to 75 years. A total of 11,939 women was examined. Of these, 10 percent (n = 1235) identified themselves as caregivers for frail, ill or disabled family members and 168 made open-ended comments about their caregiving experiences. Unlike other surveys with younger respondents, the data failed to demonstrate any differences in physical health between caregivers and others. Caregivers were, however, significantly more likely to have low levels of emotional well-being and to feel stressed, rushed and pressured. Qualitative analysis supported the value of the concept of the 'ethic of care' in understanding the social and individual forces that propel older women into providing family care despite its demonstrably negative effects on their well-being.

Lee, A. L., Strauss, L., Wittman, P., Jackson, B., & Carstens, A. (2001). The effects of chronic illness on roles and emotions of caregivers. Occupational Therapy in Health Care, 14(1), 47-60.

Approximately one fourth of the population is affected by chronic illness or disability (Schuster and Ashburn, 1992). It has been reported that caregivers of individuals with chronic illness or disability have feelings that were associated with their caregiving role. Olshansky (1962) described and termed these feelings "chronic sorrow." This study looked at the intensity of chronic sorrow in caregivers of adults with mental illness and geriatric and pediatric individuals with chronic illnesses. Also examined were the possible relationship between the caregiver's roles and the intensity of chronic sorrow they experienced. The feelings of caregivers were analyzed at different stages during the caretaking period. Using quantitative measures this study determined that chronic sorrow can linger well past diagnosis and that there are trigger events that can increase chronic sorrow. Armed with this knowledge, occupational therapists can make interventions that will more fully address the client and caregivers' needs.

Leiter, V., Krauss, M. W., Anderson, B., & Wells, N. (2004). The consequences of caring: Effects of mothering a child with special needs. Journal of Family Issues, 25(3), 379-403.

This article broadens our knowledge about family caregiving across the life course by examining caregiving and employment effects experienced by women with children with special needs, using data from a survey conducted in 1998-1999. Almost one fifth of the mothers provide at least 20 hours a week of home health care to these children. More than half of the mothers in the labor force report an employment effect in the form of reducing their hours, and more than half of the mothers at home full-time report ceasing paid employment due to their children’s needs. Experiencing these effects was most strongly associated with the child’s health characteristics. The caregiving provided by mothers of children with special needs occurs at a formative stage of their lives and may be intense and of long duration. These mothers’ experiences should be included in the current research and theories about family caregiving across the life course.

Lewis, S., Kagan, C., & Heaton, P. (2000). Dual-earner parents with disabled children: Family patterns for working and caring. Journal of Family Issues, 21(8), 1031-1060.

Family strategies for caregiving and income generation are examined in a qualitative study of employed parents of disabled children in the United Kingdom. Four family patterns for working and caring emerged: modified single earner, one and a half earners, dual earners, and flexible dual earners. A number of social, economic, and ideological factors contributed to decision making for these families. Gender expectations and related ideology of caring were usually the most salient, coloring the meanings ascribed to other influencing factors. Gender assumptions in the wider context underpin the difficulties many families experience in obtaining formal supports. The authors argue that flexible community-based and employer supports are crucial to help parents with disabled children to work and care. Beyond this, however, strategies that challenge gender expectations can extend the range of options available to parents, whereas more traditional approaches perpetuate inequalities and family hardship.

Li, L. W., & Seltzer, M. M. (2003). Parent care, intergenerational relationship quality, and mental health of adult daughters. Research on Aging, 25(5), 484-504.

This study examined the effects of parent care on the quality of adult daughter-aging parent relationships and the effects of these relationships on the mental health of daughters. One hundred ninety-six daughters who participated in the first two waves (18 months apart) of a longitudinal study of women in Wisconsin were included in this analysis. Structural equation modeling results show that providing care to a parent with both cognitive and physical impairments, but not to a parent with physical impairments only, takes a toll on the quality of the daughter-parent relationship. The quality of the daughter-parent relationship was found to be negatively associated with depressive symptoms in the daughter, and this association is largely accounted for by the daughter's self-esteem.

Lindler, L., Taubman-Ben-Ari, O., Ben-Shlomo, S. (2005). Self-esteem and willingness to help people with and without disabilities among young ultra-orthodox Jewish women. Journal of Religion, Disability & Health, 9(1), 67-82.

The current study examined the role of self-esteem in the willingness to help people with disabilities among young ultra-Orthodox women. On the one hand, these women are culturally encouraged to help people in need, but on the other, being associated with anyone with a disability may endanger their marriage prospects. One hundred and two young ultra-Orthodox Jewish women aged 16 to 23 completed Rosenberg's Self-Esteem Scale (1965) and a self-report scale which assessed their willingness to help people with and without disabilities in hypothetical scenarios. Findings showed that high self-esteem women were more willing than low self-esteem women to provide help to people with disabilities. The discussion focuses on the limits of the willingness to help under certain cultural and personal circumstances.

L'Institut Roeher Institute. (2001). Disability-related support arrangements, policy options and implications for women's equality. Toronto: Author.

This report examines equality issues of women with disabilities and the women who provide support to them in the context of caregiving relationships. The report looks at the barriers that women face, and puts forward a way of thinking about equality which is based on the lived experiences of the women interviewed as well as current feminist and disability theory.

Litt, J. (2004). Women’s carework in low-income households: The special case of children with Attention Deficit Hyperactivity Disorder. Gender & Society, 18(5), 625-644.

This article presents qualitative interview data to explore the health-related carework of low-income women caregivers with special-needs children and the implications of carework for women’s financial security. The author documents "direct" and "advocacy" carework as two types of caregiving that low-income women carry out in the context of declining government resources for poor disabled children. The author shows that the unique demands of carework responsibilities and the conditions of low-wage work combine to limit caregivers’ employment and education options as well as their long-term prospects for financial stability.

MacDonald, M., Phipps, S., & Lethbridge, L. (2005, March). Taking its toll: The influence of paid and unpaid work on women’s well-being. Feminist Economics, 11(1), 63-94.

This paper examines gender differences in the impact of paid and unpaid productive activities on well-being. Using recent Canadian data, we examine the time spent by prime-age women and men (25–54) on paid work, childcare, eldercare, household work, volunteering, and education, and then assess its impact on stress and work-life balance.Using multivariate analyses, we show that women's greater hours of unpaid work contribute to women experiencing more stress than men, and of that work, hours spent on eldercare and housework are more stressful than those spent on childcare. We also examine the influence of job characteristics and spouses' paid and unpaid work time on stress. Neither spouse's unpaid work nor most job characteristics alleviate stress, once work hours are controlled. However, the evidence suggests that women, more so than men, use strategies such as self-employment to improve work-life balance.

MaloneBeach, E. E., Skeel, R. L., & Inungu, J. N. (2004). African American women: A life course of care. Home Health Care Services Quarterly, 23(2), 1-18.

Twenty-five years of research on family care to dependent elders has produced a theoretically sophisticated understanding of the process of family caregiving. Although caregiving models initially were developed and tested on predominantly White samples, more recent work has applied these models to African American caregivers. This investigation builds on the comparative perspective by describing elder care in African American families through the eyes of the culture in which it occurs. Thirty-two African American caregivers were interviewed and asked to discuss their caregiving careers from a life course perspective. Qualitative narratives described three pathways to care: elder care only, limited life course of care, and live course of care. Recognition of the various pathways to care will enlighten tailored interventions.

Martire, L. M., & Stephens, M. A. P. (2003, February). Juggling parent care and employment responsibilities: The dilemmas of adult daughter caregivers in the workforce - Brief report. Sex Roles: A Journal of Research, 48(2-3), 167-173.

We review findings from our programmatic research on adult daughters who are simultaneously involved in the roles of employee and care provider to an impaired parent. Two opposing theoretical perspectives on the health effects of occupying these two roles are described, and empirical findings that bear on each perspective are presented. Our review reveals that, consistent with the competing demands perspective, parent care and employment often conflict with one another. Consistent with the energy expansion perspective, however, there is evidence that holding these two roles can be beneficial for the health of adult daughters.

Mayberry, P. S., & Seltzer, M. M. (1993). Older women in southwestern Ohio: Long-term care needs and resources. Oxford, OH: Scripps Gerontology Center, Miami University. Retrieved March 7, 2005 from

As the primary consumers and providers of long-term care in this country, women are disproportionately affected by the degree to which a range of long-term care services are available and accessible. This project used information from existing needs assessment data, focus group discussions with older women, and interviews with service providers to better understand the long-term care needs of older women.

McGrew, K. B. (1991). Daughters' decision making about the nature and level of their participation in the long-term care of their dependent elderly mothers: A qualitative study. Oxford, OH: Scripps Gerontology Center, Miami University. Retrieved March 7, 2005 from

This report offers the results of a qualitative study which explored the decision making process for daughters regarding the nature and level of their participation in the long-term care of their elderly mothers.

McGrew, K. B. (1998). Daughters’ caregiving decisions: From an impulse to a balancing point of care. Journal of Women & Aging, 10(2), 49-65.

This study uses a qualitative approach to explore the decision process of 10 caregiving daughters. Each daughter constructed a sense of “enough”: an equation of her multiply-determined impulse to care and her personal threshold of support. These constructions help explain the variability of levels, lengths, and forms of parent care.

McKeever, P. (1999). Between women: Nurses and family caregivers. Canadian Journal of Nursing Research, 30(4), 185-191.

“My aim in this paper is not to discredit the indisputably humane goals of the home-care movement, but rather to identify some negative consequences that deserve serious consideration. First and foremost, I believe that women currently are bearing a disproportionate share of the costs that are associated with chronic illness and disability. Because the traditional division of domestic labour undergirds government policies as essentially as do class relations, redistributive health-care practices have perpetuated gender inequalities…. Secondly, nurses and family caregivers are in ambiguous social positions and they have been pitted against one another in some untenable ways. Finally, nurses are losing wages and jobs, and family caregivers are forfeiting wages. Hence, both are losing employment benefits and pension entitlements and will have diminished lifetime earnings.”

Mehdizedeh, S. A. (2002). Health and long-term care use trajectories of older disabled women. The Gerontologist, 42(3), 304-314.

Purpose: I examined health and long-term care use trajectories of a sample of chronically disabled older women eligible for both Medicare and Medicaid by exploring their use data in order to understand and anticipate the increasing demand on the health and long-term care delivery systems as aging female baby boomers reach age 65 and older.

Design and Methods: A sample of older disabled women in Ohio who completed preadmission review was divided into three groups on the basis of the setting in which they received their initial long-term care services.

Results: I was able to establish a long-term care career for the sample members beginning with receiving long-term care in the community, followed by a transition stage in which care was received in the community and in a nursing home, and finally by a stage at which they entered and remained in a nursing home. As the sample members proceeded along their long-term care career and their health and disability status worsened, I found a clear shift in the kind of care needed from hospital and home care to nursing home care. There was also a shift in the major payer, from Medicare to Medicaid.

Implications: As the baby boomers age, a much larger number of women will be disabled and need health and long-term care services. For a considerable number of these women, Medicaid gradually becomes the major payer for care, an issue that needs close observation.

Meyer, M. H. (Ed.). (2000). Care work: Gender, labor, and the welfare state. Oxford, UK: Routledge.

Care Work is a collection of original essays on the meaning of providing care. These essays address not only the work of caring for the elderly but also the work of caring for children, the infirm and those with disabilities. The essays will approach the topic from an ethical standpoint and also from a more practical, feminist and sociological point of view. For example, contributors examine the disturbing consequences of dismantling the welfare state for workingwomen, who might not be able to afford daycare on their own, and their children. The main goal of the book is to reconceive the notion of care work, beginning with steps as simple as replacing the phrase "caregiver" with the phrase "care worker." 

Milliken, P. J. (2001, January-February). Disenfranchised mothers: Caring for an adult child with schizophrenia. Health Care for Women International, 22(1-2), 149-166.

Interviews with 29 parent caregivers of adult children with schizophrenia discovered that they periodically redefine their parental role over the course of the family member's illness. A grounded theory of "redefining parental identity" is briefly reviewed. As the child's schizophrenia develops, parents come to regard themselves as disenfranchised. That is, although parents assume the right to take on responsibility for their family member, neither the legal system, mental health practitioners, nor often the ill persons themselves recognize that right. Particularly for the 16 mothers who tend to be the primary family caregivers, this lack of parental rights negatively affects their caregiving experience, especially as regards their caregiver stress, their experience of guilt and grief, and ultimately their own health.

Miltiades, H. B., & Pruchno, R. (2002, February). The effect of religious coping on caregiving appraisals of mothers of adults with developmental disabilities. The Gerontologist, 42(1), 82-92.

Researchers explored the association between race and religious coping on caregiving appraisals for mothers who co-reside with an adult child with mental retardation.

Morris, J. (1991). Feminist research and “community care.” In J. Morris, Pride against prejudice: Transforming attitudes to disability (pp. 146-168). Pittsburgh: New Society Publishers.

In this chapter, Morris argues that while feminists have paid much attention to “community care” policies, they have virtually ignored the experiences of disabled women. She asserts that feminist concerns about women's roles as caregivers must be re-examined from a disability perspective. Traditionally, feminists have rejected community care policies which depend on women's unpaid labor in the home, thereby excluding women from the labor market and reinforcing their economic dependence on men. While these feminists would call for community care in residential settings, Morris argues that disabled people want services within the community, and therefore reject the traditional feminist view of community care.

The author claims that the differences between these two views is because the feminists who are writing and researching in the area of women and care do not actually need physical care themselves. In ignoring the experiences of those women who need care, they silence disabled women and force them into the role of the other. These feminists only see women as carers, not as those being cared for, thereby legitimizing one side and marginalizing the other.

In response to these feminists, Morris offers a critique from a disabled feminist perspective. She argues that research needs to examine the meaning of “caring for” and “caring about” and especially the meaning of home (separated from the political feminist critique of the family). She asserts the feminist scholarship needs to understand this issue from a disability perspective and to see as the goal disabled women living in the community and receiving supports from caregivers whose work is valued, appreciated, and adequately compensated.

Morris, J. (1993). Independent lives: Community care and disabled people. London: Macmillan Press.

This book is a qualitative study which explores the experiences of disabled people who receive help with daily living activities. Based on in-depth interviews with 50 people and using a feminist perspective and a disability rights perspective, Morris challenges the discourse around community care policies. She illustrates how residential care is often replaced by institutionalization in community settings, and further challenges policy makers and those who provide care to recognize the basic civil rights of people with disabilities, and that part of their civil rights is to receive physical help.

Morris, J. (2001, Fall). Impairment and disability: Constructing an ethics of care that promotes human rights. In E. Kittay, S. Silvers, & S. Wendell (Eds.), Special issue: Feminism and disability.  Hypatia, 16(4), 1-16.

The social model of disability gives us the tools not only to challenge the discrimination and prejudice we face, but also to articulate the personal experience of impairment. Recognition of difference is therefore a key part of the assertion of our common humanity and of an ethics of care that promotes our human rights.

Morris, M. (2001, December). Gender-sensitive home and community care and caregiving research: A synthesis paper. Winnipeg, MB: Centres of Excellence for Women's Health, The National Coordinating Group on Health Care Reform and Women. Retrieved March 8, 2005 from

This synthesis paper is a review of 45 gender-sensitive studies of home and community care and caregiving. To read an Executive Summary of this paper, go to:

This organization has several other publications concerning caregiving, including “Home Care and Women: An Annotated Bibliography of CEWHP Home Care Documents,” “The Objective Is Care: Proceedings Of The National Think Tank On Gender And Unpaid Caregiving, November 8-10, 2001,” “One Hundred Years of Caregiving,” and “Women and Home Care: Why Does Home Care Matter to Women?” All of these publications can be downloaded at the Publications page at:

Munford, R. (1994). The politics of caregiving In M. H. Rioux & M. Back (Eds.), Disability is not measles: New research paradigms in disability (pp. 265-284). Toronto: L’institut Roeher Institute.

This chapter explores the meaning of care to those who give and receive it in order to challenge the current way it is organized. It examines the ways in which the caregiving relationship can be changed and how alliances with people with intellectual disabilities can be formed. The author bases her argument on the premise that non-disabled researchers and writers need to situate themselves in the research project and in the particular situation they are writing about.

Munford's chapter is divided into three sections. The first section provides a context by discussing important influences on the researcher and writing process. She argues that researchers must understand how their research can reinforce the powerlessness of those they are researching. She feels that researchers need to form equitable relationships with the people with disabilities whom they are researching. The second section focuses on important concepts in the caring relationship which are necessary to understand what happens in a caregiving relationship. The third section explores the role of social policy in constructing the lives of people with disabilities. The author argues for the importance of examining social policy in terms of disability of a social and political category. Hopefully then social policies will have possibilities for choice and empowerment for people with disabilities.

National Alliance for Caregiving (NAC). (1998, September). The caregiving boom: Baby Boomer women giving care. Bethesda, MD: Author. Retrieved March 8, 2005 from

Results of a 1998 survey of 267 women by the Equitable Foundation. Looks at types of information sought, and what is and would be most helpful. Outlines caregiver’s futures and the financial consequences of caregiving, and offers recommendations for the state of affairs.

National Coordinating Group on Health Care Reform and Women. (2002). Women and health care reform. Winnipeg, MB: Canadian Women’s Health Network. Retrieved March 8, 2005 from

“Women are the majority of health care receivers and health care providers in Canada. Approximately 80% of paid health care workers are women. Women provide most of the unpaid health care within the home. During the past decade, federal and provincial governments introduced major changes to the health care system. These health care reforms have a significant impact on women as patients, health care providers, and family caregivers. Health care reforms affect women’s health, work and financial well-being.”

National Network on Environments and Women’s Health. (2000). The impacts of policy on the health and well-being of women raising children with disabilities. Toronto: National Author. Retrieved March 8, 2005 from

In October 2000, a round table was held with mothers raising children with disabilities as key informants. The purpose of the roundtable was to explore the impacts of policy on women's health and well-being related to raising children with disabilities. The round table was held in Edmonton, Alberta took place in conjunction with the 6th International Congress on the Inclusion of Children with Disabilities and the Canadian Association for Community Living Family Conference.

This brief document concludes that “…It is apparent that the current state of affairs for some women who are raising children with disabilities has a significant impact on their own health and well-being, as well as on their social and economic opportunities and sense of social security. Mothers raising children with disabilities are clear that the negative impacts on their own health and well-being are a direct result of current policy and the translation in delivery of programs and service, not the direct care of their child per se.”

Nicholas, D. B. (1999). Meanings of maternal caregiving: Children with end stage renal disease. Qualitative Health Research, 9(4), 468-478.

The study described in this article examined the lived experience of mothers who provide care for their children with End Stage Renal Disease (ESRD). A total of 32 mothers participated in interviews, and 8 were observed in their natural setting for a prolonged period. Findings illuminated unique meanings about maternal caregiving that were individually constructed by each caregiving mother. These meanings appeared to be related to previous maternal life experiences and future expectations for mothers' lives. Implications call for sufficiently flexible resources that allow mothers to renegotiate care in ways that are consistent with unique maternal meanings and needs.

Older Women’s League (OWL). (2001). Faces of caregiving: 2001 Mother’s Day report. Washington, DC: Author. Retrieved March 7, 2005 from

"Informal caregiving" is a catch-all phrase that refers to unpaid care and financial support provided by family members or friends to people with chronic illness or disabilities. It is an irreplaceable source of long-term care and support in America. As many as 52 million Americans, or 31 percent of the adult population, are informal caregivers. Almost one-quarter of American households provide care to friends or relatives age 50 or older. Gender makes a difference when it comes to informal caregiving. Nearly three-quarters of informal caregivers to seniors are women. The typical informal caregiver is a married woman in her mid-forties. She is employed full time and spends an average of 18 hours per week caregiving.

The report reminds us that women provide the majority of informal caregiving—and often pay a steep price for their efforts. Caregivers suffer reduced wages and job security, which inevitably lead to diminished retirement security. Informal caregivers also experience emotional and physical stress that can take a toll on their own health.

Pan American Health Organization, Regional Office of the World Health Organization. (n.d.). Fact sheet of the Program on Women, Health & Development: Women’s unremunerated health work. Washington, DC: Author. Retrieved March 8, 2005 from

“Modern health systems are able to operate because women are willing to shoulder the burden of care for their partners, family members, friends and communities. Women have historically been responsible for the care of sick and disabled family members as an extension of their domestic roles. Over recent years however, a number of factors have combined to increase women’s burden of unpaid health work… This burden of care increasingly presents an obstacle to the development of women’s own human capital, and places enormous strains on family relations, household budgets, and paid care services.”

Pelchat, D., Lefebvre, H., & Perreault, M. (2003). Differences and similarities between mothers’ and fathers’ experiences of parenting a child with a disability. Journal of Child Health Care, 7(4), 231-247.

This qualitative study used focus groups to identify the differences and similarities in the experiences of parents of children with a disability. Two main themes emerged, showing the ways in which the mothers and fathers are alike or different. One concerns roles, actual and expected, in the various subsystems of family life. The other concerns the normalization and stigmatization that arise because of the child’s problem. Mothers tend to score better in terms of interpersonal and group communications. It would seem that the fathers’ expectations are harder to fulfill than the mothers’. The fathers’ expectations are attuned to the outer world; the actual day-to-day tasks related to the child’s care are not their priority. The mothers are less demanding and their expectations are more self-focused. Interestingly, these families are similar to families of children without a disability; however, the difficulties they experience are accentuated by the presence of a child with a problem.

Perry, J. (2004). Daughters giving care to mothers who have dementia: Mastering the 3 R’s of (re)calling, (re)learning, and (re)adjusting. Journal of Family Nursing, 10(1), 50-69.

Using the process of constant comparative analysis to examine interview data, the current study explored the process of taking on and continuing to give care to mothers with dementia. The sample consisted of 19 daughters and 1 daughter-in-law; all but one were living with the mother. The core phenomenon of mastery captured the processes of (re)calling, through (re) learning how to be with the mother to (re)adjusting as the daughters try to take care of themselves and consider placing their mother in a nursing home. Through these processes, the daughters essentially deconstruct their images of their mother and rebuild the image to include the impact of the disease process. The inclusion of the cognitive work adds an additional focus for potential intervention with daughters who, in providing care for their mothers, form such a vital part of current health care systems.

Porter, E. J., Ganong, L. H., & Armer, J. M. (2000). The church family and kin: An older rural Black woman's support network and preferences for care providers. Qualitative Health Research, 10(4), 452-470.

Although kin and church are considered premier support sources for rural elders, few scholars have undertaken descriptive studies to explore the nature of rural Black elders' support networks and their preferences for in-home service providers. In the case study described in this article, methods of support network analysis and descriptive phenomenology were used to analyze data from five lengthy, open-ended interviews with a 94-year-old rural Black woman. The various groups and individuals of her network are labeled in her words, the network's supportive functions are described, and preferences for providers are noted. In addition, the varying structures of her home care experience with the support network members are described. Her attempts to voice and exercise her preferences for in-home service providers are explained in terms of two contrasting processes: preference uptake and preference suppression. Based on these findings, implications for appraising the appropriateness of rural elders' in-home services are discussed.

Pridmore, A. (1997, June 15-20). Self-determined living for disabled women using personal assistance. Paper presented at the International Leadership Forum for Women with Disabilities, Bethesda, MD. Retrieved November 8, 2004 from

This is text of a speech delivered during the International Leadership Forum for Women with Disabilities on the author’s experiences “…as a woman employing Personal Assistants in Great Britain…” and ….”giv[es] an overview of how and why I started using Personal Assistants and then go on to describe the positive and negative aspects of self-determined living for women using Personal Assistants.”

Pruchno, R., Patrick, J. H., & Burant, C. J. (1997, October). African American and White mothers of adults with chronic disabilities: Caregiving burden and satisfaction. Family Relations, 46(4), 335-346.

A model is developed and tested that explains the effects of race on the caregiving experience by patterning relationships between race and several causal agents.

Rahmanou, H. (2001, October). Research-in-Brief: The widening gap: A new book on the struggle to balance work and caregiving [IWPR Publication #C349]. Washington, DC: Institute for Women’s Research. Retrieved March 8, 2005 from

This Research-in-Brief is based on selected findings from a new book by Jody Heymann, Director of Policy at the Harvard Center for Society and Health. Published by Basic Books in 2000, The Widening Gap: Why America’s Working Families are in Jeopardy and What Can Be Done About It reveals the failure of our nation’s employer-based support system to help families meet their caregiving responsibilities.

This brief examines differences in caregiving by income and sex, how benefits are inadequate to help low-income families, how women have fewer needed benefits, examines inadequate child care policies and offers policy recommendations.

Ray, L. D. (2003, August). The social and political conditions that shape special-needs parenting. Journal of Family Nursing, 9(3), 281-304.

This article presents the findings of a secondary analysis of data from 30 interviews with parents who are raising children with chronic health conditions. Using Giddens’s structuration theory, the social and institutional conditions that shape special-needs parenting are examined. The conditions include professional attitudes, categorical allocation of services, lack of information, poor service coordination, school access challenges, societal perceptions of disability, responsibility debates, the feminization of family care giving, public reliance of family care, and the status of everyday parenting. Illustrations of how these issues affect families’ everyday lives are provided along with a discussion of the implications for child-and family-friendly services and public policy and for social action.

Reisine, S. T., & Fifield, J. (1988, December). Defining disability for women and the problem of unpaid work. Psychology of Women Quarterly, 12(4), 401-415.

Discusses political, theoretical, and methodological issues in defining and measuring paid and unpaid work disability. Presents results of study analyzing disability in paid work and unpaid family work among 206 women with rheumatoid arthritis, demonstrating feasibility of measuring disability in family work and showing that women experience significant limitations in homemaker functioning and in paid work roles.

The Roeher Institute. (2001). Disability-related support arrangements, policy options and implications for women's equality. Toronto: Author. Retrieved May 7, 2005 from

This report examines equality issues of women with disabilities and the women who provide support to them in the context of caregiving relationships. The report looks at the barriers that women face, and puts forward a way of thinking about equality which is based on the lived experiences of the women interviewed as well as current feminist and disability theory.

Rolf, K. A. (2003, March). Exceptional children and everyday jobs: The effect of caring for a child who has a chronic illness or a disability on parents' work hours. Unpublished doctoral dissertation, University of Chicago, Chicago, IL.

Using data on 28,000 families from the Survey of Income and Program Participation (1988 and 1990-1993), the study assesses the impact of the presence of a child with a disability or chronic illness on the decisions by mothers and fathers to work full-time, part-time, or at all, and the impact on the number of hours worked. The impact for single mothers is actually greater in some cases than the impact of caring for an additional child who does not have a disability or chronic illness. The effect for married mothers is somewhat smaller. For all females, those lower in the
income distribution experience a larger negative effect on the probability of working full-time, or at all, and on the number of hours worked per week. The observed effect for fathers is to increase their share of total household working hours.

Sommers, T., & Shields, L. (1987). Women take care: The consequences of caregiving in today's society. Gainesville, FL: Triad Publishing Company.

An informational book about the financial, emotional, and physical problems suffered by those--primarily women--who care for the chronically ill. Written from a feminist perspective, by the co-founders of the Older Women's League (OWL), it focuses upon the medical, legal, and policy issues surrounding caregiving, and offers pragmatic suggestions.

Songwathana, P. (2001, April-May). Women and AIDS caregiving: Women's work? Health Care for Women International, 22(3), 263-279.

In this ethnographic study, I examine personal, kinship, and social obligations and the role of women in the traditional Thai family. Under what circumstances do women take on the responsibility to care or not care, and how do they cope with the disease and care when they are also infected? Fifteen women who were afflicted or affected by HIV/AIDS participated in in-depth interviews and participant observations. Analysis employed mainly qualitative methods following Spradley. I show that women who are responsible for caring for both themselves and others, including members of their immediate families or extended family members, face a double jeopardy by virtue of their inferior role and status. When HIV-infected women experience illness, sometimes they feel split; they are incapable of functioning normally, yet they are obligated to do "What they've got to do." Women as carers feel that they have to care because they want to free someone else from suffering despite the fact that they are also suffering. Women roles as family carers seem to be both psychologically and socially constructed. AIDS care is not just a labour of love, but also is done in the spirit of work following Buddhist beliefs of karma and metta. In conclusion, traditional, persistent gender imbalances and inequalities influence women's sexuality, vulnerability, responsibility, and caregiving. When women become infected with HIV and sick with AIDS, their quality of life drops because of the physical, psychological, cultural value, and economic burdens of care they face. AIDS then necessitates rather than prevents women from fulfilling their multiple roles. Consequently, there is a need for greater support especially among Thai women who are afflicted and affected with AIDS.

Traustadottir, R. (1991). The meaning of care in the lives of mothers of children with disabilities. In S. J. Taylor, R. Bogdan, and J. A. Racino (Eds.), Life in the community: Case studies of organizations supporting people with disabilities (pp. 185-194). Baltimore: Paul H. Brookes Publishing Co.

In this qualitative chapter, Traustadottir explores the gender differences in caring for a child with a disability within the family. She discovered that the responsibility for caring is based on gender. The study revealed the term "caring" as a complex phenomenon that has at least three meanings. Caring for: the work, means acquiring specialized knowledge and techniques which are associated with professional work (not traditional mothering work). The second definition is caring about: the love. This refers to relationships and emotions. The third definition is the extended caring role. The meaning of care extends from a woman's own child to broader community or societal concerns surrounding people with disabilities and the way they are treated in society.

The author also discusses gender roles and the responsibility or caring. The women are usually responsible. This begins when she decides to keep her child at home rather than a residential setting. This is almost always the mother's decision because it is understood that she will be the primary care giver. In addition to this work, she is responsible for the housework and other family work. Furthermore, the baby is not seen as a restriction on family life if it only restricts the mother. However, if the family feels restricted then the situation is considered problematic. Some women see the job of caring as their "natural" responsibility, while others resist this traditional gender role.

The author concludes by stating that disability studies needs to look at gender as a critical issue and needs to examine issues of gender and the roles of mothers and fathers in families.

Traustadottir, R. (1991). Mothers who care: Gender, disability, and family life. Journal of Family Issues, 12(2), 211-228.

The purpose of this qualitative study is to explore the role of gender in families which have children with disabilities. The author seeks to fill a gap in the literature on family supports and disability, which frequently ignores the gendered nature of caring and women's unpaid work within the family. Based on interviews, the author attempts to understand caring from the carer's perspectives, and examines the meanings and activities entailed in caring and how caring for a child with a disability influences the life of their primary caregiver. She also explores how gender influences the caring for a child with a disability, the extent to which mothers of children with disabilities see their caring role and experiences as oppressing and/or empowering, and how they negotiate their caring role within the family with outside careers. She finds that families of children with disabilities tend to follow the most traditional family patterns, with the husband as breadwinner and the wife as caretaker.

The author attributes this tendency to larger economic structures which pay women less for their work. Given this, when traditional caring becomes necessary such as when a child with a disability is born into the family, families are given little choice as to who has to quit their jobs because wage discrimination still renders women's pay less than men's pay.

Traustadottir, R. (1992). Disability reform and the role of women: Community inclusion and caring work. Unpublished Doctoral Dissertation, Syracuse University, Syracuse, NY.

This dissertation is a feminist qualitative study of the role of women in the community inclusion of people with developmental disabilities. The author demonstrates that despite the face that women constitute the vast majority of those who do the day-to-day work of inclusion, their contributions go unnoticed and are invisible. Through in-depth interviews and participant observation, the author examines women's caregiving and relationship building in the areas of family as mothers of children with disabilities, in the human service system as paid workers, and in the context of friendships. Crucial to this study is the idea that caring is not a personality trait inherent in being a woman, rather it is created through social interactions. Women are recruited for caregiving through powerful social arrangements and this social construction of women as caregivers continues throughout their lives.

The analysis outlines the multiple ways women's work is made invisible, and that the field of disability studies does nothing to make this work visible. In fact, often exploits women by not recognizing and understanding the work that they do. The author concludes by articulating areas for change in the fields of feminist scholarship and disability policy.

Traustadottir, R. (1995). A mother's work is never done: Constructing a "normal" family life. In S. J. Taylor, R. Bogdan, & Z. M. Lutfiyya (Eds.), The variety of community experience: Qualitative studies of family and community life (pp. 47-65). Baltimore: Paul H. Brookes Publishing Co.

The author examines the everyday lives of families of children with disabilities. She explores the ways in which the family attempts to construct an "ordinary" or "normal" family life. Traustadottir analyzes the gendered organization involved in constructing and maintaining a normal family life. Through qualitative research based on interviews and participant observation, Traustadottir found that families of children with disabilities devote much time trying to lead a "normal" family life. For the most part this meant following the traditional family pattern of full time wife and mother and working father. She suggests that presence of disability in the family causes parents to compensate by conforming as closely as possible to traditional gender roles.

The author also discusses implications for professionals, stating that they need to be aware of individual perspectives of families. She also addresses how broader socio-cultural issues such as class, race, ethnicity, and gender influence the lives of families of children with disabilities.

Turcic, E. K., & Hughes, R. S. (2004). Caregiving influenced by gender and spirituality. Journal of Religion, Disability & Health, 7(4), 41-53.

Current trends in American families point to the importance of sibling relationships as part of lasting family ties. In families where a child has a disability, siblings are often called upon to be caretakers of their sibling with a disability. Consistent with the research on the caretaking of elderly parents, females are more likely to become caretakers of members with disabilities due to gender role expectations. Such caretaking females face unique emotional and spiritual challenges as they cope with their unique role in the family. This paper will serve as an introduction to the explanation behind the caregiving role for sisters of siblings with disabilities and their consequent spiritual challenges and coping resources.

Walmsley, J. (1993). Contradictions in caring. Disability, Handicap & Society, 8(2), 129-141.

Walmsley uses research about the experiences of women with learning difficulties and shows how they, like non-disabled women, often find themselves in caring roles, and they too find this role both sustaining and frustrating. She argues that to attempt to divide the experiences of the "carer" and the "dependent" is virtually impossible because the relationships are both reciprocal and interdependent. The author argues for a new understanding of the caring relationship in that the carer and the cared for be considered together, not in opposition to one another.

Warfield, M. E., & Hauser-Cram, P. (1996, October). Child care needs, arrangements, and satisfaction of mothers of children with developmental disabilities. Mental Retardation, 34(5), 294-302.

This study examined experiences of 44 employed mothers of children (age 5) with developmental disabilities who had searched for and found child care services within the preceding year. Care by relatives was the most common arrangement; center-based care the least common. Severity of developmental delay and the presence of behavior problems resulted in greater difficulty in locating care.

Watson, N., McKie, L., Hughes, B., Hopkins, D., & Gregory, S. (2004). (Inter)dependence, needs and care: The potential for disability and feminist theorists to develop an emancipatory model. Sociology, 38(2), 331-350.

In this article we examine the tensions between feminist and disability studies perspectives on care. We argue that an emancipatory model of care is one that must address these tensions. In developing this model we consider the notions of (inter)dependence and need across the lifecourse. Drawing on the work of Fraser (1989), we propose that the notion of 'needscape' can be used to construct a 'discourse bridge' that will mediate between the disability studies and feminist perspectives on care. Notions of care and caring have been subject to criticism by feminist and disability theorists. There is a presumption by some that care is an activity to which women are naturally suited and this forms a starting point for the claim associated with the feminist view that care is a source of women's exploitation. For disability activists notions of care are dis-empowering. The person in receipt of care is often assumed to be passive and dependent. This is exemplified in the limited access of disabled people to choices over the nature and form of the social support that they may need.

Weinberg, J. K. (2000). Review essay: The past, present, and future of long-term care--A women's issue? [Book review]. Journal of Health Politics, Policy and Law, 25(3), 566-582.

“One of the more troubling dilemmas for the public policy arena as it anticipates a burgeoning of the aging population in the coming years is whether it is possible to integrate ethical decision making and policy imperatives to construct a framework for serving the elderly when resources are limited. Is this a women's issue? Perhaps. Women do live longer than men, and they are statistically more likely to be both the recipients and providers of services to the elderly. But demographics aside, the complexity of discourse about filial or societal obligation, accountability, and resource allocation have given the issue universal relevance. “

Whalley Hammell, K. R. (1992). The caring wife: The experience of caring for a severely disabled husband in the community. Disability, Handicap & Society, 7(4), 349-362.

This article explores the experiences of wives who assume a caring role following the onset of a husband's severe disability. Given the fact that modern medicine has increased the chances of survival of a major injury, these disabled people are returning to their communities and needing care. The author examines the social expectations of women's role in the provision of care for people with severe disabilities. The author argues that community care actually means care by women, and she looks at who care for people with disabilities in the community, why these women care, the impact of caring on these women, how to support carers (what their needs are) and some implications of community care policies.

Wickham-Searl, P. (1992). Careers in caring: Mothers of children with disabilities. Disability, Handicap, and Society, 7(1), 5-18.

The author studied the experiences of 14 women who were mothers of children with disabilities. These women had extended their family caregiving roles to public work in the disability field in order to help other families. Their work often stemmed from a lack of available services and programs for their own children and their insights here led them to help other parents. Several themes developed during these interviews. Among them are the reliance on personal experience for guidance in the caregiving and public work process, the importance of their mothering role and their children, the realization that people with disabilities and their caregivers are not valued in society, and the search for legitimation for their work.

Wickham-Searl, P. (1994). Mothers of children with disabilities and the construction of experience. Research in the Sociology of Health Care, 11, 175-187.

In this qualitative study, the author seeks to understand and describe the meaning of expertise in the lives of mothers of children with disabilities who extend their caring role from inside the family to social activism in disability related work outside of the family. The author bases her research in feminist theories concerned with the nature of women's work, the value of personal experience, and the importance of conversations between women. The author found that these women developed confidence in their caring work within their own families and gradually began to work on behalf of others with disabilities. These women regarded themselves as experts both at home and in the community, and attributed this to their home work, their interactions with professionals, and their work in the field of disability in general.

Wuest, J. (2001, January-February). Precarious ordering: Toward a formal theory of women's caring. Health Care for Women International, 22(1-2), 167-193.

Given the current societal and political trends toward increasing demands on women to provide care, a conceptualization of caring that captures the common processes of diverse women's caring experiences, and makes the consequences of caring for women's health visible, is critical for the development of a health and social policy that is responsive to women. The findings of this feminist grounded theory study go beyond the current theoretical understandings of women's caring, framed as either burden or fulfillment. The complex strategies women use to manage the dissonance created by competing and changing caring demands are revealed as a process I have named precarious ordering. This middle range theory demonstrates the power and resilience in women's management through the interdependent processes of setting boundaries, negotiating, and repatterning care. In addition, the method of theoretical sampling used in this study is explicated to move toward a formal theory applicable to diverse women's caring in a wide range of health, illness, and developmental situations.

Zauszniewski, J. A., Fulton Picot. S. J., Roberts, B. L., Debanne, S. M., & Wykle, M. L. (2005). Predictors of resourcefulness in African American women. Journal of Aging and Health, 17(5), 609-633.

Although resourcefulness may facilitate coping with caregiver stress and burden, it has not been among African American women for whom caregiving is culturally prescribed.

Objective: Using Rosenbaum’s theory of resourcefulness, this study examined situational (socioeconomic status, social support, daily hassles), physiological (age, body mass index, number of health problems, systolic blood pressure), and psychological factors (positive cognitions) as predictors of resourcefulness.

Methods: A random sample of 97 African American caregivers and 110 noncaregivers provided data via structured interviews and 24-hour ambulatory blood pressure monitoring.

Results: No physiological indicators predicted resourcefulness; however, daily hassles, social support, and positive cognitions were significant predictors. Age, number of health problems, daily hassles, and social support had indirect effects on resourcefulness through positive cognitions.

Discussion: These findings suggest a need to further examine the impact of daily hassles, social support, and positive cognitions on caregiving and continued review of models for predicting resourcefulness in African American women.