Lone Caregivers Research Articles

Time in the State of Dementia Caregiving in South Korea: When Care Becomes (Non-)Waiting.

Exploring how time emerges as a central problem for lone family caregivers of people with dementia, this article draws attention to care as a way of being in time with others. In addition to active doings that are oriented toward achieving goods that have drawn much attention in recent anthropological discussion on care, care of an intimate other often entails the state of being for the caregiver on which another person's way of being in the present heavily relies. Examining how time is experienced among caregivers who strive to live in the dyadic world of home-based dementia care in South Korea, I consider care as (non-)waiting both in the long term, anticipating the end of the state of caregiving, and in everyday life anticipating small and large fluctuations and interruptions. In the state of caregiving, time is experienced as tense, repetitive, and chronic, which needs to be endured in order for an intimate other to be within the family. Lone caregivers' accounts of the overwhelming weight of care-time both allow and demand us to consider care as a way of being in time with the other, and attend to the experiences of lived time constituted by the difficult intersubjective relationship and its effects on the possibility of having a sense of the near future. This article calls for attention to caregiving as a state in which temporalization becomes challenging, if not impossible.

A Pressure Release Valve: South Korean Long-Term Care Policy as Supplemental to Family Elder Care

ABSTRACT South Korea’s National Long-term Care Insurance (NLTCI) has received international acclaim for its universal continuum-of-care model. Based on 25 qualitative interviews with family caregivers, this research explores the relationship between NLTCI policies and experiences of family caregiving for older people. Caregivers who share care responsibilities or are supported by other family are coping well with minor to moderate policy recommendations. Lone caregivers without support from other family are struggling and express desire for expanded services. These findings highlight a need for more consideration of the influence of family dynamics on informal caregiver burdens. Despite many strengths, NLTCI policy functions as a pressure release valve, supplementing family care for seniors – not replacing it – with minimal gender equity contributions.

Variation in health literacy among family caregiver communication types.

Previously, four caregiver types have been identified as a result of communication patterns between patient and caregiver, revealing unique caregiver information needs and preferences. The purpose of this study was to explore variation in health literacy among the four family caregiver communication types: manager, partner, carrier, and lone caregivers. The sample consisted of 115 cancer caregivers. Participants completed the Family Caregiver Communication Tool and the Health Literacy of Caregivers Scale-Cancer. A significant difference in health literacy domains was found between caregiver types for cancer-related communication with the care recipient (P = .038) and understanding of the health care system (P = .003). Of the health literacy domains, mean scores were highest on understanding the health care system for both lone and carrier caregivers. Manager and partner caregivers were highest on the social support domain. The self-care domain was lowest for the carrier, lone, and manager caregivers. There was a variation across health literacy domains among caregiver communication types, further validating the Family Caregiver Communication Typology. Findings showed a need for educational programs for cancer caregivers to strengthen their health literacy skills. As cancer caregivers have a prominent role in the delivery and quality of cancer care, it is pivotal for health care centers to provide caregiver communication training and support.

Validation of a model of family caregiver communication types and related caregiver outcomes.

Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types-Manager, Carrier, Partner, Lone-each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes. This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains. Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life. This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test interventions that target specific caregiver types.

Family caregiver communication in oncology: advancing a typology.

The quality of communication between the patient and family caregiver impacts quality of life and well-being for the two; however, providers have few tools to understand communication patterns and assess the communication needs and preferences of caregivers. The aims of this study were to examine family communication patterns among oncology patients and their caregivers and to identify common characteristics among four different types of family caregivers. Nurses recruited oncology patient-caregiver dyads through a large cancer treatment center in the Southeast. Patients and caregivers were separated from one another and interviewed during chemotherapeutic infusions. Interviews were recorded, transcribed, coded, and thematized. A sample of 24 patients and their caregivers (n = 48) were interviewed. The majority of dyads (21, 88%) shared the same family communication pattern. Common caregiver communication features support previous work identifying four caregiver communication types: Manager, Carrier, Partner, and Lone caregivers. Manager caregivers lead patients by utilizing extensive medical knowledge, whereas Carrier caregivers were led by patients and described tireless acts to maintain the family and avoid difficult conversations. Partner caregivers facilitated family involvement and open communication on a variety of topics, while Lone caregivers focused solely on biomedical matters and a hope for cure. Caregiver communication types were corroborated by patient-caregiver descriptions of caregiving. However, more information is needed to ascertain the variables associated with each caregiver type. Future work to improve identification of caregiver types and create targeted caregiver care plans will require further study of health literacy levels and tested communication interventions per type.

Adoption and guardianship: A moderated mediation analysis of predictors of post-permanency continuity.

The original thinking behind permanency planning for foster children was to secure a caregiver's intention to provide a permanent home, not to guarantee it. Little is known, however, about how intentions change after permanence or what effect this change has on post-permanency continuity of care. This study examined the mediating effects of caregivers' thoughts about ending an adoption or guardianship, and how this mechanism may be contingent on primordial and bureaucratic factors that child welfare agencies rely on to ensure family continuity after legal permanence. In 2006, a sample of 346 Illinois caregivers who finalized an adoption or guardianship between 1998 and 2002 completed surveys about child behavior problems, the adequacy of financial assistance, and thoughts about maintaining the permanency relationship. Responses were linked to administrative data that tracked continuity of care through 2012. Simple mediation and moderated mediation hypotheses of the effects of caregiver thoughts on post-permanency continuity were tested. At last observation, 8% of caregivers were no longer living with the child or stopped receiving subsidies on the child's behalf. Thoughts expressed at survey time about ending the permanency relationship mediated the effect of child behavior problems on post-permanency discontinuity rates. This indirect effect was more pronounced among distantly related kin, lone caregivers, and caregivers who felt the subsidy was inadequate to cover their expenses. Our findings suggest that post-permanency services should target a narrow segment of caregivers who express weakened permanency commitments that arise from the challenges of parenting a child with multiple behavioral problems.

Substantiating neglect of first nations and non-aboriginal children

First Nations (Native American) children are greatly overrepresented in the Canadian child welfare system, and disproportionality in the substantiation of maltreatment contributes to this overrepresentation. This study explores the factors driving disproportionality in the substantiation of maltreatment and, more specifically, neglect. Data from the Canadian Incidence Study of Reported Child Abuse and Neglect (2008) are used in multivariate analyses which examine the relationship between the substantiation of maltreatment/neglect and worker assessments of case, child, household, and caregiver characteristics. These case factors fully explain disproportionality in maltreatment substantiation for First Nations and non-Aboriginal children; the disproportionality reflects underlying differences in the case, child, household and caregiver characteristics identified in First Nations and non-Aboriginal investigations. However, case factors do not fully explain disproportionality in substantiation of neglect-only investigations. Further analysis indicates that the weight that workers assigned to caregiver substance abuse, housing problems, and presence of a lone caregiver when substantiating neglect also differed for First Nations and non-Aboriginal children. Discussion of these findings explores possible explanations for these differences, and links to broader discussions around definitions of neglect and the role of substantiation in child welfare decision making processes. • Focus: First Nations/non-Aboriginal child maltreatment substantiation in Canada • Higher substantiation rate in First Nations investigations, especially for neglect • Difference in maltreatment substantiation rates reflects case factor differences. • A difference in neglect substantiation persists even with case factors controlled. • Differential case factor weighting also drives difference in neglect substantiation.

Early motherhood and harsh parenting: The role of human, social, and cultural capital

Objective This study examined the role of maternal human, social, and cultural capital in the relationship between early motherhood and harsh parenting behavior. Methods This study used data from the Fragile Families and Child Wellbeing (FFCW) Study. Harsh parenting behaviors by mothers who were 19 years or younger at birth of the focal child ( n = 598) were compared with that of adult mothers 26 years or older ( n = 1,363). Measures included: For harsh parenting behavior, three proxies were created from the Parent to Child version of the Conflict Tactics Scales (CTS-PC) and self-reports of maternal spanking. For maternal human capital, education, employment, and depression were used. For maternal social capital, expected-social support, paternal support, and lone caregiver status were included. For maternal cultural capital, religious attendance and attachment to race/ethnic heritage were used. Results Multivariate analyses indicated that adolescent motherhood has a significant impact on all three harsh parenting behavior outcomes even after controlling for demographic and maternal capital characteristics. Working since the birth of the focal child, depression scores, paternal support, expected-social support, and attendance at religious services made independent contributions to the prediction of harsh parenting behavior. Conclusions Findings emphasize the importance of the prevention of adolescent motherhood and suggest intervention strategies for reducing the risk of maternal harsh parenting behavior. Further study is necessary to examine the complicated relationships among maternal capital and parenting. One method may be to focus on the development of measures of maternal capital, notably measures of expectations regarding and perceptions of received capital. Practice implications Findings from this study have implications for social work practice, particularly for the prevention of adolescent pregnancy and intervention with adolescent mothers and their children. First, the study calls for more recognition of school social work and intervention programs in school settings as important components of prevention services. Second, the importance of identifying fathers and helping them become involved and connected with their young families are highlighted. Finally, practitioners should become more aware of the role of culture in young families as the effect of cultural capital on parenting behavior becomes better understood.

Relatives of patients with severe mental disorders: unique traits and experiences of primary, nonprimary, and lone caregivers.

The authors examined caregivers' characteristics and experiences. Previously suggested principles for identifying the primary caregiver in 22 multiple-caregiver families were assessed, but none reliably distinguished the primary caregiver. The authors then compared primary (n = 22), nonprimary (n = 22), and lone caregivers' (n = 43) appraisals of caregiving and psychological distress. Lone and primary caregivers' experiences were similar, but nonprimary caregivers' experiences were less adverse. Despite these findings, greater psychological distress in primary caregivers indicated greater psychological distress in nonprimary caregivers.

Parental care sex differences in the brown bullhead, Ictalurus nebulosus (Pisces, Ictaluridae)

Males were the principal care-givers in the brown bullhead, Ictalurus nebulosus. Direct observations on individually tagged adults in nature revealed that males attended broods at closer distances than females and were the most frequent lone care-givers. However, females often participated in parental care and in some cases assumed the typical male role in the absence of the male. In the presence of her mate, females generally performed different care-giving functions than males. Females attended broods at a distance and chased other fishes more frequently than males. Males remained directly over the brood guarding. A series of mated pairs in each of three reproductive conditions were captured and examined. Different pairs were compared between reproductive conditions for body weight, body condition, gonadal-somatic index, and a gut-contents index. The inital costs of reproduction, as measured by weight loss, condition change, and gonadal-somatic index change, were more severe in females than males. During breeding and subsequent care-giving, males did little or no feeding whereas females increased their feeding during the same time period. However, males appeared to sustain only minor weight and condition losses due to care-giving. I suggest that males were the principal care-givers because the net benefits of remaining at the nest were greater than the net benefits of leaving. Males had little opportunity to mate with more than one female each season, and offspring had little chance of survival in the absence of a care-giving adult. Considerable variation in female behavior occurred which suggests that the net benefits of care-giving were nearly balanced with the net benefits of leaving the brood. The relative importance of feeding versus care-giving by females may vary with slight differences between females and the behavior of their mates as care-givers.