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The purpose of this article is to critically analyze the concept of self-perceived burden. The Rodgers Evolutionary Model is augmented with concept critique, a dialogic process grounded in critical hermeneutics. Self-perceived burden is a relatively mature concept with psychological, relational, and dimensional attributes that are shaped by culture and sociopolitical structures. The antecedents are demographics, circumstances, diagnoses, symptoms, prognosis, comorbidities, and knowledge and beliefs. The consequences are psychological, decisional, relational, and existential. Sociocultural factors such as universal health coverage, Confucian ethics, Buddhist/Taoist ethics, karma, and individualist- versus communitarian-based relationships are brought to light. Psychological and relational antecedents and consequences of self-perceived burden were found to be salient.

<p>Caring for older family members has become a focus of national attention among policy makers given concerns for the quality of life of both caregivers and care recipients. Although caregivers’ siblings often represent important ties for both the adult children providing care and parents receiving care, there has been limited attention to how siblings affect one another’s well-being during parent care. Guided by theories of identity and stress, the central aims of this dissertation are to investigate: (1) Whether perceiving care-related criticism from siblings is associated with higher depressive symptoms among adult children providing care to their mother; and (2) whether caregivers’ gender and the gender composition of the sibling networks in which they are embedded influence caregivers’ probability of perceiving care-related criticism from siblings. To achieve these aims, I utilize both quantitative and qualitative data collected from adult children providing care to their mothers as part of the Within-Family Differences Study-II. This mixed-methods approach enables me to not only examine statistical relationships, but also to identify mechanisms underlying these statistical patterns.</p><p>Quantitative analyses revealed that perceived care-related criticism from siblings was not directly associated with caregivers’ depressive symptoms, but rather operated through its association with sibling tension. Consistent with theories of identity maintenance, qualitative analyses suggested that, in response to their siblings’ criticisms, caregivers often reacted in ways that may have been protective for their identity as a “good caregiver,” but that could have been a catalyst for sibling conflict and, in turn, psychological distress. Once perceived sibling criticism was established as a stressor with detrimental consequences for caregivers’ relational and psychological well-being, I then explored whether caregivers’ gender, as well as the genders of their siblings, shape caregivers’ probability of perceiving sibling criticism. As I anticipated based on theories of gender and group dynamics, daughters’ probability of perceiving sibling criticism depended on the gender composition of the sibling networks in which they were embedded; in particular, daughters in predominantly-son families had a notably lower risk of perceiving care-related criticism than daughters in families with a higher proportion of daughters. Consistent with theories of tokenism, qualitative data revealed that adult children in families with a higher proportion of daughters were less able to rely solely on gender stereotypes to shape caregiving expectations. As a result, there tended to be less consensus among siblings regarding who best understood their mother’s care needs and preferences, and higher rates of perceived sibling criticism among daughters.</p><p>Taken together, these findings demonstrate the influence that identity processes, as well as the sibling networks in which caregiving takes place, have in shaping the experiences and consequences of parent care. This work demonstrates the value of utilizing a mixed-methods approach to gain a nuanced understanding of complex family processes. In addition, these findings offer valuable insights to health care professionals and other stakeholders who interact with and serve family caregivers. By understanding the mechanisms through which sibling context may contribute to psychological distress among caregivers, these stakeholders will be better prepared to identify and address caregivers’ socio-emotional needs.</p>

The purpose of this article is to critically analyze the concept of self-perceived burden. The Rodgers Evolutionary Model is augmented with concept critique, a dialogic process grounded in critical hermeneutics. Self-perceived burden is a relatively mature concept with psychological, relational, and dimensional attributes that are shaped by culture and sociopolitical structures. The antecedents are demographics, circumstances, diagnoses, symptoms, prognosis, comorbidities, and knowledge and beliefs. The consequences are psychological, decisional, relational, and existential. Sociocultural factors such as universal health coverage, Confucian ethics, Buddhist/Taoist ethics, karma, and individualist- versus communitarian-based relationships are brought to light. Psychological and relational antecedents and consequences of self-perceived burden were found to be salient.

The purpose of this study was to examine sibling relationships and caregiver burden in families raising children with disabilities (CWD). In order to determine (a) are there differences in caregiver burden according to parent gender and types of disability (b) are there differences in sibling relationships according to parent gender and type of disability and (c) is there a relationship between caregiver burden and sibling relationships after controlling for CWD and sibling gender and age, and type of disability? After IRB approval, 166 families living in the west and raising typically developing children (TDC) or a CWD participated. Disabilities included autism; Down syndrome (DS); other disabilities (OD), which included orthopedic impairment, intellectual disabilities, emotional or physical disabilities, health impairment; and multiple disabilities (MD), which included both physical and intellectual disabilities. After consenting, both parents independently completed the 28-item Schaefer Sibling Inventory of Behavior. This inventory ranked sibling behaviors in relation to kindness, involvement, empathy,and avoidance. Additionally a revised version of the Caregiver Strain Index (Robinson, 1983) measuring hassle and frequency of burden was utilized. Mothers completed a demographic questionnaire. Analyses included descriptive statistics, a MANOVA, correlations, and multiple regressions. Results indicated mothers perceived more burden than fathers for all disability types. Parents of children with autism perceived the highest burden, and mothers of TDC and fathers of children with DS perceived the least amount burden. Mothers rated female siblings higher in kindness, involvement, and empathy than male siblings. Whereas, fathers rated siblings of children with OD as least avoidant; as did mothers of children with DS. The highest sibling relationship scores were fathers' rating of empathy in families raising children with DS and mothers' rating of empathy in families raising children with MD. There was a positive relationships between caregiver burden for both parents and between both parent's ratings of sibling empathy, kindness, and involvement. A negative relationship was found between parents'ratings of avoidance and empathy, kindness and involvement. All caregiver burden variables were positively related to avoidance. Siblings may benefit from information regarding a child's disability in order to decrease avoidance behavior. It would also be important to provide interventions/information about respite care and other appropriate community resources to parents of children with autism in order to help decrease the burden they experience. Finally, parents of CWD may benefit from information regarding the effect their perception of burden has on relationships between the child and siblings.

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This thesis investigates the stories of Jewish women and men living in Europe during the Holocaust who made decisions related to pregnancy, abortion, birth, and ‘parenting’ in ghettos, concentration camps, and in hiding. By reviewing existing, publicly accessible survivor testimonies, and by interviewing still-living survivors, I analyze the various ways Jewish women and men used available but limited forms of reproductive assistance to preserve their own lives and to secure the safety of their unborn or born children. Jewish women and their doctors or other ad-hoc medical providers weighed the risks of possible illness or diseases resulting from clandestine care against the seemingly greater or graver risk of Nazi exposure. By highlighting stories from Holocaust survivors who speak about experiences receiving or providing reproductive “health care” during the Holocaust, this study emphasizes what survivors say about seeking or providing abortions under conditions they might not have otherwise accepted, pursued, or suggested. Women who became pregnant during the Holocaust embody the unspeakable dilemma of “birthing into death,” as reproduction often meant murder for Jewish mothers. Pregnant Jewish women and their partners, the medical providers who attended to them, and their witnesses during the Holocaust all have unique perspectives on their own in-the-moment responses to pregnancy under extreme conditions. Their testimonies speak to how the decisions they made involved Jewish cultural notions of childrearing in Europe during the time of the Holocaust, and to the complex shaping of traumatic memory.

This dissertation explores the transnational care perspectives and practices of black immigrants working on the frontlines of eldercare in Greater Boston. Responding to the critical shortage of caregivers for the burgeoning aging population, first-generation immigrants from African and Caribbean countries find work in this field, performing physically and emotionally grueling work as Home Health Aides and Certified Nursing Assistants for low pay and few benefits. At the same time that these caregivers provide the most intimate care for older Americans and adults with disabilities, they often take on caring responsibilities for their aging relatives abroad. Evidence from fifty in-depth interviews with African and Caribbean caregivers reveals that these immigrants are changing the climate of eldercare in the U.S. as well as in their countries of origin by providing eldercare-specific economic and social remittances to their families abroad and fictive kinship through creative emotion work for their clients in the United States. These practices are informed by their transnational social location and work experiences which expose these caregivers to different state systems and care cultures. A dual evaluation of the perceived strengths and weaknesses of national eldercare systems produces for them a general definition of compassionate eldercare as the delivery of life saving medical care and skillful emotion work that ensure elders feel dignity in body and mind. Along with perceived cultural differences, these caregivers identify income inequality and weak welfare regimes as producing atmospheres of resource deficit and emotional deficit in the countries of origin and country of settlement, respectively. These perceptions provoke these caregivers to attend to the observed deficit and provide well-balanced compassionate care for their dependents, whether family member or client. These immigrant caregivers derive a sense of agency and pride from "filling the voids" in care for their clients and family members, arming them with a positive transnational caring identity strategy that helps guard against racism and marginalization they often experience on the job. Taken together, these findings reveal new ways of thinking about eldercare best practices and illustrate how actors at the micro level can inform institutional change at the global level.

This research explored psychological, social, and relational aspects of caregiving. It examined documented resolution of ethical dilemmas precipitated by veterans' medical crises and involved formal caregivers, informal caregivers, and veteran patients. The unit of analysis was caregiving relationships. The main research question asked, how does case documentation and documented processes of resolving ethical dilemmas in institutional healthcare for veterans reflect relational ethics? Relational ethics was defined as fairness of interpersonal give and take and included efforts to elicit, understand, and honor veteran's values and care preferences. The caregiving context was a Veterans Affairs Medical Center (VAMC). The research population was 25 male veterans whose cases required intervention by the VAMC ethics committee. The research was conducted in three phases using grounded theory methodology. The research purpose, guided by symbolic interaction theory, was to develop substantive theory in relational ethics. Study analyses used Atlas.ti qualitative software. Main study one, Veteran-Formal Caregiver Relations, focused on relational processes internal to the VAMC. It explored how members of professional healthcare disciplines documented ethical caregiving concerns amongst themselves and in interactions with veteran patients. Agency emerged as the core category. Agency meant that veteran patients could make choices and act on those choices in ways that impacted their care. When veterans' agency was compromised, formal caregivers' roles became more salient. The substantive theory was the dynamic process of clarifying agency. Main study two, Formal-Informal Caregiver Relations, focused on interactions between VAMC staff and veterans' significant others. It explored medical center staff communications with informal caregivers regarding veterans' health problems. Documented interactions confirmed the impact of relational ethics. Agendas and advocacy emerged as key categories that determined and respected veterans' relational autonomy. Relational autonomy validated other ethical concerns and resource demands, considered social context, and included obligations as well as entitlements. The substantive theory was the agenda to advocate for relational autonomy. Substantive theories from the two main studies were integrated. Categorical dimensions were combined into substantive theory; that doing the right thing in institutional caregiving for veterans was the dynamic process of clarifying agency with the agenda to advocate for relational autonomy. / Ph. D.

In this study I assessed a causal model between caregivers’ prior relationship to care-receivers, commitment to the relationship, and depression in parental and spousal caregiving, based on social exchange and commitment theory. Data (N=695) from the National Survey of Families and Households (NSFH) were used to test a path model examining the effects of relationship quality and commitment, as well as ace, gender, income, education, health, living arrangement, emotional support, and adult children's marital¥ status on depression. This study began the process of combining the social psychological concept of commitment and the gerontological caregiving literature. The expected effects of commitment on depression were not statistically significant for either spousal caregiving or parental caregiving. As for spousal caregiving, caregivers’ health and relationship quality were negatively associated with caregivers’ depression. In parental caregiving, caregivers’ education and health had negative effects on caregivers' depression. The quality of the relationship with spouse or parent was notable for explaining commitment to the relationship. The predicted positive effect of relationship quality with parent on moral commitment was contradicted by a Statistically significant finding of a negative effect. Spousal caregivers’ structural commitment to marital relationship was positively affected by the quality of the relationship with spouse. / Ph. D.