Parents of Adults with Intellectual and Developmental Disabilities (IDD) and Compound Caregiving Responsibilities

In some cases, parents caring for an adult child with an intellectual and/or developmental disability (IDD) must balance this with caregiving for another family member. This dual responsibility, referred to as “compound caregiving”, may contribute to increased feelings of distress, or change their perceived ability to care for their child. The current study examined how compound caregivers differ from other parents of adults with IDD, and whether compound caregiving is significantly associated with family distress. Data was available for 199 parents aged 38 to 91 years who were seeking adult services for their son or daughter with IDD. Parents completed a mailed questionnaire and telephone interview in which they indicated compound caregiver responsibilities. Parents identified as compound caregivers were then compared to those who were not in terms of family characteristics, as well as parental perceptions of burden and mastery, and family distress as measured by the Revised Caregiver Appraisal Scale and the Brief Family Distress Scale, respectively. Nearly half of the parents reported being compound caregivers. The demographic profile of these parents was no different from that of the other parents but their children were slightly younger. Compound caregiving was significantly associated with parental perceptions of burden and mastery and family distress. Demands outside of caring for an adult child with IDD can negatively influence family functioning and must be included as part of caregiving assessments.     

Caregiver behavior in center and family day care

In an effort to examine relationships between variations within day care settings and adult caregiving behaviors the social experiences of 40 toddlers and their caregivers in family and center care were systematically observed. Caregivers were interviewed and conditions of caregiving recorded. Caregivers in both settings with fewer children in their care, who worked shorter hours, with less housework responsibilities engaged in more facilitative social stimulation, expressed more positive affect, were more responsive, and less restrictive and negative. Family day care caregivers who worked in spaces specifically designed to be safe and appropriate for children were less restrictive of toddler activity. Adult-child ratio and caregiver training appeared to be the best indicators of quality care in center day care, while a safe and appropriate caregiving environment and small groups appeared as quality indicators in family day care.     

Engagement and suffering in responsible caregiving: On overcoming maleficience in health care

The thesis of this article is that engagement and suffering are essential aspects of responsible caregiving. The sense of medical responsibility engendered by engaged caregiving is referred to herein as ‘clinical phronesis,’ i.e. practical wisdom in health care, or, simply, practical health care wisdom. The idea of clinical phronesis calls to mind a relational or communicative sense of medical responsibility which can best be understood as a kind of ‘virtue ethics,’ yet one that is informed by the exigencies of moral discourse and dialogue, as well as by the technical rigors of formal reasoning. The ideal of clinical phronesis is not (necessarily) contrary to the more common understandings of medical responsibility as either beneficence or patient autonomy — except, of course, when these notions are taken in their “disengaged” form (reflecting the malaise of “modern medicine”). Clinical phronesis, which gives rise to a deeper, broader, and richer, yet also to a more complex, sense than these other notions connote, holds the promise both of expanding, correcting, and perhaps completing what it currently means to be a fully responsible health care provider. In engaged caregiving, providers appropriately suffer with the patient, that is, they suffer the exigencies of the patient's affliction (though not his or her actual loss) by consenting to its inescapability. In disengaged caregiving — that ruse Katz has described as the ‘silent world of doctor and patient’ — provides may deny or refuse any ‘given’ connection with the patient, especially the inevitability of the patient's affliction and suffering (and, by parody of reasoning, the inevitability of their own. When, however, responsibility is construed qualitatively as an evaluative feature of medical rationality, rather than quantitatively as a form of ‘calculative reasoning’ only, responsibility can be viewed more broadly as not only a matter of science and will, but of language and communication as well — in particular, as the task of responsibly narrating and interpreting the patient's story of illness. In summary, the question is not whether phronesis can ‘save the life of medical ethics’ — only responsible humans can do that! Instead, the question should be whether phronesis, as an ethical requirement of health care delivery, can ‘prevent the death of medical ethics.’     

Filial Responsibility and the Care of the Aged

What obligations and responsibilities, if any, do adult children have with respect to their aged parents? This paper briefly considers the socio-historical and legal bases for filial obligations and suggests there is a mismatch between perceptions in the community over what they see as their obligations, what policy makers would like to impose and how philosophers identify and ground these obligations. Examining four philosophical models of filial obligation, we conclude that no one account provides an adequate justification for the types of responsibility that might be assumed in a family relationship.     

Ibsen's Nora and the Confucian Critique of the “Unencumbered Self”

Criticisms of the liberal‐individualist idea of the “unencumbered self” are not just a staple of communitarian thought. Some modern Confucian thinkers are now seeking to develop an ethically particular understanding of social roles in the family that is sensitive to gender‐justice issues, and that provides an alternative to liberal‐individualist conceptions of the “unencumbered self” in relation to family roles. The character of Nora in Henrik Ibsen's A Doll's House seemingly exemplifies such conceptions of the unencumbered self in her rejection of her housewife role for a more authentic selfhood. Drawing upon the capabilities approach to justice, and positive early Japanese bluestockings’ responses to Ibsen's play, I argue that Nora's character is better understood as exemplifying an ethically compelling disencumbered self in potentially cross‐cultural circumstances: a self criticizing and rejecting social roles that are found to be unjust according to universal, as opposed to particularist, “Confucian” ethical standards.     

The origins of mother blaming: Historical perspectives on childhood and motherhood

This article presents a historical review of society's changed perceptions of the values of childhood from the first century a.d. to the present. Factors that have influenced the responsibilities subsequently placed on the mother because of her “natural and instinctual” abilities are discussed. Until the 20th century, children received little attention from the scientific community. There is now much empirical evidence to guide practitioners in addressing the physical and psychological needs of children. However, assumptions are made by clinicians that the primary, if not critical, responsibility for the child's growth, development, and behavior should be placed on the mother. This can result in mothers being blamed for the behavioral errors and problems of their children.     

promoting employability in a “flat” world

T. L. Friedman (2005) described a “flat” world platform where competition and collaboration take place in real time among people all over the planet. Implications exist for people to assume responsibility for managing their own careers and ensuring their own security in a global economy. This article addresses those challenges from both the individual's and the career counselor's perspectives. It proposes the “intelligent career” framework—comprising 3 “ways of knowing” and interdependencies among them—as a helpful basis for effective career development. People can use the framework to navigate their careers in order to develop new skills, develop broader reputations, and in turn sustain employability.     

The effects of parental illness and other ill family members on youth caregiving experiences

Informed by a model of family role redistribution derived from the family ecology framework, this study examined differences in two proposed psychological components of role redistribution (youth caregiving experiences and responsibilities) between youth of a parent with illness and their peers from ‘healthy’ families controlling for the effects of whether a parent is ill or some other family member, illness type and demographics. Based on self-report questionnaire data, four groups of Australian children were derived from a community sample of 2474 youth (‘healthy’ family, n = 1768; parental illness, n = 336; other family member illness (OFMI), n = 254; both parental and OFMI, n = 116). The presence of any family member with a serious illness is associated with an intensification of youth caregiving experiences relative to peers from healthy families. This risk is elevated if the ill family member is a parent, if more illnesses are present and by certain youth and family demographics, and especially by higher caregiving responsibilities. The presence of a family member, particularly a parent, with a serious medical condition has pervasive increased effects on youth caregiving compared to healthy families, and these effects are not fully accounted for by illness type, demographics or caregiving responsibilities.     

Better Never to Have Been Born

The pro‐life paradox, as I call it, begins with a single claim endorsed by many American Christians: infants and young children are innocent in the sight of God because they cannot yet take responsibility for their spiritual well‐being. With this in mind, I argue that pro‐life believers have unwittingly fallen victim to a theological paradox in which their attempts to save the earthly lives of unborn children make it theoretically possible for said children to die an eternal death. On the one hand, many Christians trust in an eventual spiritual reckoning where God will separate the “sheep” from the “goats” (see Matthew 25:31–46), ushering the former into heaven while damning the latter to hell. However, those who cannot yet repent and seek salvation are not blamed for their spiritual failings. If they die, they go to heaven because they are too young and intellectually immature to know any better. But if dead children are spiritually blameless, then abortion practitioners have perversely and paradoxically saved millions of unborn souls by removing human volition (and thus damnation itself) from the equation and by making it possible for the unborn to experience the joys of heaven without the temptations of earth.     

Spouses, adult children, and children-in-law as caregivers of older adults: a meta-analytic comparison

The present meta-analysis integrates the results from 168 empirical studies on differences between caregiving spouses, adult children, and children-in-law. Spouses differ from children and children-in-law significantly with regard to sociodemographic variables; also, they provide more support but report fewer care recipient behavior problems. Spouse caregivers report more depression symptoms, greater financial and physical burden, and lower levels of psychological well-being. Higher levels of psychological distress among spouses are explained mostly--but not completely--by higher levels of care provision. Few differences emerge between children and children-in-law, but children-in-law perceive the relationship with the care recipient as less positive and they report fewer uplifts of caregiving.     

To grandmother's house we go? Around the bend on the “mommy track”

This paper focuses on caregiving issues and their salience for women as the primary providers of care to elderly relatives. Assignment to caregiving roles on the basis of gender reflects cultural values and has important social, psychological, and economic implications. Advances in biomedical technology are changing the nature and duration of women's traditional responsibilities for elder care, and present trends suggest that long-term care concerns will continue to gain in prominence as the American population ages. Socialization processes and demographic factors impose greater caregiving burdens on women than on men. A resurgence of interest in family responsibility for elder care, arising out of growing public concern over rapidly rising costs, also affects women disproportionately. The greatest danger is that serial caregiving will compound and reinforce women's current disadvantages in the labor market. Policies that move toward more equitable distribution of caregiving burdens are clearly overdue.     

“Growing your own herbs” and “cooking from scratch”: Contemporary discourses around good mothering,food, and class‐related identities

In a cultural climate of “intensive parenting” and concerns about the “obesity epidemic,” parents are expected to take responsibility for their children's health, particularly through the provision of a “healthy” diet. This study involved intergenerational dyad interviews with both middle‐class and working‐class mothers and daughters from the United Kingdom. Analysing the data using discourse analysis informed by feminist poststructuralist theory, we found that mothers were positioned as having prime responsibility for the nurturing of family members, including the provision of a healthy diet. However, providing a healthy diet alone was insufficient; mothers needed to demonstrate that time and effort had been taken in the preparation of meals using fresh ingredients. Those who failed to do so were positioned as “lazy,” thus inviting the blaming of mothers for any current or future health problems encountered by family members (especially children). However, talk from some of the working‐class mothers pointed to the unattainable and “classed” ideals that are set by such cultural expectations.     

The desire to be remembered: A review and analysis of legacy motivations and behaviors

The psychological motivations and mechanisms underlying a desire to be remembered after death is an understudied area in the social sciences. While previous research has indirectly investigated the pursuit of legacy as a means of coping with death anxiety, little attention has been paid to other potential factors involved in the appeal of leaving an individualistic (usually positive) mark in society that will outlive the self. In the present paper, we broaden the theoretical examination of the human drive for legacy, considering proximate motivations (e.g., alleviating death anxiety, concluding one's “life story” well, etc.) and ultimate causes (i.e., the direct or indirect reproductive effects that post-mortem reputations confer to surviving relatives). Additionally, we consider cognitive factors related to afterlife beliefs and perceptions of post-mortem consciousness, and their potential role in legacy-related desires. We conclude by discussing areas for further empirical investigations of the legacy drive.     

The Effect of Life Events and Relationships on Adult Women's Decisions To Enroll in College

This study was designed to investigate the role of life events and “relationship” morality in women's decisions to enroll in college. Interviews with 38 women, ages 25–46, indicated that the timing for women returning to college was determined by the state of their relationships and life events and not solely by motivation. Enrollment was often postponed until children were “old enough,” family responsibilities were lessened, or fellow workers or employers would not be inconvenienced.     

Caregiving Attitudes,Personal Loss,and Stress-Related Growth Among Siblings of Adults with Mental Illness

As parents age, well siblings are often asked to assume caregiving responsibilities for their brother or sister with mental illness. However, relatively little is known about how well siblings prioritize sibling caregiving responsibilities with other life demands. We examined well siblings’ attitudes toward self-care and caregiving for their sibling with mental illness (self- and sibling-care) using two cross-sectional samples. The first sample of well siblings (N?=?242) was used to examine the psychometric properties of the self- and sibling-care measure (SSCM), designed to assess the degree to which siblings prioritize their own needs and the needs of their sibling with mental illness. A second sample (N?=?103) was used to determine the relative contribution of self- and sibling-care attitudes in accounting for variation in well siblings’ reports of personal loss and stress-related personal growth. Results support the psychometric validity of the SSCM and suggest that self- and sibling-care attitudes account for greater variance in scores on perceived personal loss and stress-related growth than demographic or caregiving factors. Our findings support the need to address family care responsibilities and resource limitations through recovery-oriented mental health policies, services, and programs.     

Enmeshed lives: adult children with developmental disabilities and their aging mothers

This article uses equity theory to examine the ways in which aging mothers and their adult children with developmental disabilities support each other and the effects that this exchange has on the caregiving satisfaction and burden of the mothers. Data from 305 mothers revealed that exchange flows both from mother to child and from child to mother. Results indicate that caregiving satisfaction increased when affection from child to mother was greater. Caregiving burden was not affected by either functional support or affection from child to mother.     

Raising American Citizens: Socialization Goals of Low-Income Immigrant Latino Mothers and Fathers of Young Children

Based on ecocultural theory, this study utilizes focus group interviews to explore the ways Latino immigrant mothers and fathers transmit the values and beliefs they wish their young children to internalize. Findings suggest that parents purposely “pick and choose” values they deem “Latino,” such as the importance of family and values they deem “American,” such as independence, to pass on to their children. Parents recognized three main barriers that might stand in their way of teaching their children to adapt to two cultural groups: balancing work and family, low self-esteem, and lack of good parental role models. However, they also pointed out two sources of strength that can help them overcome these barriers: optimism and motivation. This study provides a basis for generating hypotheses to be tested with larger datasets and informs the development of theory and culturally sensitive interventions and measures to evaluate Latino parenting.     

“Sandwiched generation” couples: A cross-cultural,cross-gender comparison

Maintaining a job while managing family responsibilities has become a major issue for much of today's workforce. Working couples who care both for dependent children and aging parents constitute a fast growing and understudied group called “the sandwiched generation.” Because of their multiple roles, these workers tend to be highly stressed and likely to have burnouts. The article presents the results of an exploratory study that compared 40 Israeli “sandwiched generation” couples living on a kibbutz, 80 Israeli couples living in small towns and 75 American men and women. The methodology involved a self-report questionnaire that included measures of social support, work–family conflict (WFC) and burnout. The findings revealed both cross-cultural and cross-gender differences: Americans reported higher WFC than Israelis whereas Israelis reported higher family–work conflict (FWC) than Americans. In addition, men received more support from their spouse than women with both work and family problems, Israelis received more help from their spouse with both home and work problems than Americans, and Israeli kibbutz members received more help from their spouse with both home and work problems than Israeli city dwellers. Support from the spouse for both work and home problems was found to be negatively correlated with burnout. These findings, as tentative as they are, demonstrate the theoretical and practical importance of studying “sandwiched generation” couples.