Stillbirth: The Mother's Experience and Implications for Improving Care

ABSTRACT

More children die as a result of stillbirth than all other causes of infant deaths combined (Ananth, Shiliang, Kinzler, and Kramer, 2005; Goldenberg, Kirby, and Culhane, 2004; Froen, 2005; National Institute of Health, 2004); yet, mothers experiencing stillbirth are often left without support afterwards (Kubler-Ross, 2004; Fahey-McCarthy, 2003; Fletcher 2002; Saddler, 1987; DeFrain, 1986; Kirkley-Best & Kellner, 1982). Despite social work's growing involvement in care at the end of life, parents of stillborn children have not experienced consistent, relevant, and competent professional care in coping with the tragedy of death. Forty-seven women between the ages of 19 and 51 were recruited through nonprofit agencies that provide bereavement care to grieving families. Results of this qualitative study suggest that stillbirth is emotionally complex with long-lasting symptoms of grief and significant struggles to find meaning. The findings also support the need for perceived psychosocial and spiritual support from professional caregivers, family, and friends. The women's own experiences argue for comprehensive approaches to support the grief and loss of stillbirth, and for the importance of social work involvement in both immediate and longer term interventions.     

Live Discharge from Hospice and the Grief Experience of Dementia Caregivers

When an individual has dementia, family members are involved in many care transitions in their roles as caregivers. One such transition is the ‘live’ discharge from hospice services. This occurs when an individual no longer meets eligibility criteria. This can be difficult for caregivers who have been anticipating an end to understand in the context of their grief process. This qualitative study (N = 24) explored the experience of caregivers of adults with dementia, including Alzheimer’s disease, who experienced a ‘live’ discharge from hospice. Specifically, the experience of grief is examined. Results from this study highlight the complexity of caring for someone with a terminal disease and the grief experience in end-of-life care as caregivers struggle to understand the individual’s terminal prognosis as temporary. This is further complicated for caregivers who must resume caregiving responsibilities or assume a new caregiving role after experiencing a loss of hospice services. Finally, hospice social workers are well positioned to offer emotional and other concrete support to caregivers who experience a ‘live’ discharge.     

Veterans’ Informal Caregivers in the “Sandwich Generation”: A Systematic Review Toward a Resilience Model

Social work theory advanced the formulation of the construct of the sandwich generation to apply to the emerging generational cohort of caregivers, most often middle-aged women, who were caring for maturing children and aging parents simultaneously. This systematic review extends that focus by synthesizing the literature on sandwich generation caregivers for the general aging population with dementia and for veterans with dementia and polytrauma. It develops potential protective mechanisms based on empirical literature to support an intervention resilience model for social work practitioners. This theoretical model addresses adaptive coping of sandwich- generation families facing ongoing challenges related to caregiving demands.     

Mosaic of Difference

Summary

The professional literature has not adequately addressed the behavioral and social factors that contribute to different coping outcomes for African American elder caregivers as compared to non African Americans. Awareness and understanding of these unique experiences would better prepare professionals to work with such clients. This study examines the predictors of emotional distress among 46 African American women who provide care to dependent elderly parents. Multivariate statistical analyses show that elder caregivers' rating of quality of life, their years of caregiving, as well are their poor heath constitute significant predictors of risk for depression. The results of the study provide support for the inclusion of more culturally appropriate measures of caregiver distress, and provide insights to inform social work practice, policy and research concerning African American female elder caregivers in the 21st century.     

Stillbirth: the mother's experience and implications for improving care

More children die as a result of stillbirth than all other causes of infant deaths combined (Ananth, Shiliang, Kinzler, and Kramer, 2005; Goldenberg, Kirby, and Culhane, 2004; Froen, 2005; National Institute of Health, 2004); yet, mothers experiencing stillbirth are often left without support afterwards (Kubler-Ross, 2004; Fahey-McCarthy, 2003; Fletcher 2002; Saddler, 1987; DeFrain, 1986; Kirkley-Best & Kellner, 1982). Despite social work's growing involvement in care at the end of life, parents of stillborn children have not experienced consistent, relevant, and competent professional care in coping with the tragedy of death. Forty-seven women between the ages of 19 and 51 were recruited through nonprofit agencies that provide bereavement care to grieving families. Results of this qualitative study suggest that stillbirth is emotionally complex with long-lasting symptoms of grief and significant struggles to find meaning. The findings also support the need for perceived psychosocial and spiritual support from professional caregivers, family, and friends. The women's own experiences argue for comprehensive approaches to support the grief and loss of stillbirth, and for the importance of social work involvement in both immediate and longer term interventions.     

Access to Services by the Elderly:

Abstract

This analysis evaluated the hypothesis that comorbidity, as a measure of physical health status, would negatively impact the stress management capability of caregivers. To examine this relationship, data from 3,112 caregivers participating in the Uniform Caregiver Assessment through California's Caregiver Resource Center System in 2000 were used. Results indicated that comorbidity was not a significant predictor of caregiver inability to manage stress; however, high depression scores, disruptive behavior by the care receiver, and reduced social support from family and friends were significantly associated. Implications for social workers in these areas are discussed.     

The Process of Change in Complicated Grief Group Therapy for Bereaved Dementia Caregivers: An Evaluation Using the Meaning of Loss Codebook

ABSTRACT

Caring for a person with dementia has adverse health and mental health effects that, for 9–25% of caregivers, persist as complicated grief (CG). For bereaved dementia caregivers unable to satisfactorily grieve, specialized Complicated Grief Group Therapy (CGGT) can restore healthy grief. We investigated therapeutic change in CGGT participants, using an adapted version of the Gillies’ Meaning of Loss Codebook. Participants demonstrated positive gains in 16 thematic areas, notably in moving on with life, summoning pleasant memories, and ascribing bad memories to disease rather than decedent. Meaning transitioned from negative to positive interpretations of the death over the course of treatment.     

Caregivers' Coping and Self-Forgiveness After the Death of a Care-Receiver

ABSTRACT

This study explores the relationship of self-forgiveness with adaptive coping and nonadaptive coping. This study addresses self-forgiveness as part of the grieving process of Alzheimer's disease caregivers. One hundred and thirty-three caregivers who had recently lost a loved one were surveyed. The bivariate analysis revealed a significant relationship between self-forgiveness and adaptive coping and non-adaptive coping. Furthermore, stepwise regression models computed for the study variables revealed that adaptive coping and non-adaptive coping were statistically significant in explaining the variation in self-forgiveness. Based on these findings, future directions in research are explored.     

Caregiver's Spirituality and Its Influence on Maintaining the Elderly and Disabled in a Home Environment

ABSTRACT

This study examined the role that faith-based organizations play for caregivers in maintaining the elderly and disabled in their homes. The study explored if persons who use religious beliefs and practices cope with caregiver stress better than those who do not use religious beliefs and practices. The study also explored the role of religious coping as a factor affecting decisions to institutionalize, and the role that faith-based practices and organizations play in helping caregivers maintain the elderly and disabled in their homes.     

Ageing-in-place in studio apartments in Singapore: maintaining independence in community living

Abstract

Living alone in later life is increasingly a common style of living in Singapore. We investigated the extent of maintaining independent living in a studio apartment using a survey of older residents (n = 925), focusing on three aspects of coping strategies: self-care management, social support, and use of social services. As compared to older adults who lived with others, those who lived alone had better self-care management, tended to rely more on friends and neighbours, and indicated higher use of social services. Those living alone also showed higher awareness in managing their health. This study provides valuable insights to understand the issues on coping strategies involved with living alone in later life.     

Efficacy of an Educational Program for Relatives of Persons in the Early Stages of Alzheimer's Disease

Abstract

This article describes the results of an educational intervention for family caregivers of persons in the early stages of Alzheimer's disease. A total of 45 family caregivers participated in this intervention that consisted of five weekly educational sessions about the disease and aspects of caring for someone in the early stages. Measures of knowledge about Alzheimer's disease, self-efficacy, reactions to patients' memory impairment, and level of depression at pretest and posttest were analyzed. Participants' knowledge about the disease improved substantially, self-efficacy and reactions to patients' impairments improved moderately, and level of depression showed no significant improvement. Results suggest that this intervention has merit for family caregivers coping with the early stages of Alzheimer's disease. Implications for implementation and evaluation are discussed.     

A perfect storm: Challenges encountered by family caregivers of persons with Alzheimer’s disease during natural disasters

ABSTRACT

Since Hurricane Katrina there has been a movement across the U.S. to examine best practice for disaster response within the aging population. However, little is known about the experience of natural disasters from the perspective of family caregivers of persons with Alzheimer’s disease and related dementia (ADRD). In this exploratory, qualitative study, family caregivers (n=27) were interviewed about their experience with the historic 2015 South Carolina flood. By using thematic analysis, themes were identified to better understand what unique challenges caregivers of person with ADRD experienced. While many caregivers stated they had experienced a natural disaster previously, none had ever done so in their current caregiving role. The caregiving role affected their ability to prepare for the storm and influenced their decision-making regarding evacuation and utilization of recovery resources. Thus, caregivers were confronted by a “perfect storm” of circumstances and uncertainty. Family caregivers need to have actionable emergency plans for disasters that are specific to their role as caregivers of persons with ADRD. Study implications also suggest the role social work professionals can have in educating, advocating, evaluating, and coordinating support to assist caregivers of persons with ADRD as a potentially vulnerable and at-risk population during all phases of disaster.     

Measuring Family Caregiver Perceptions of Support in Caring for Children and Youth With Mental Health Concerns

ABSTRACT

This correlational study assessed how families of children with mental illness perceived the levels of support they received from informal and formal resource providers and the associations between perceived support and child outcomes. Adult caregivers (N = 904) of youth receiving public mental health care services were administered the Family Caregiver Perceptions of Support Scale developed by the authors to assess family caregiver perceptions of support prior to and at termination of services. Factor analysis identified three types of caregiver anticipated supports: informal support resources, support for treatment plan influence, and health care resources. The domains were significantly and positively associated with one another but did not uniformly correlate with youth mental health outcomes. The study provides preliminary evidence that treatment gains in youth mental health outcomes are observed when caregivers perceive support in treatment processes. Suggestions for future research are made, stressing the importance of caregivers and providers working together and describing needs related to future scale improvements.     

Social Support,Caregiver Burden,and Life Satisfaction in a Sample of Rural African American and White Caregivers of Older Persons With Dementia

This article reports the findings of a study of African American and White dementia caregivers (n = 141) living in rural areas of Alabama that examined the relations between the participants' receipt of informal social support, and their levels of caregiver burden and life satisfaction. The sample, as a whole, reported high levels of social support with no reported differences in social support by race. Female caregivers reported higher mean scores on 3 of the 4 dimensions of social support than their male counterparts. Two of the 4 dimensions of social support accounted for 32% of the variance of the caregivers' reported level of life satisfaction.     

Dementia Caregivers and Live Discharge from Hospice: What Happens When Hospice Leaves?

ABSTRACT

Hospice offers holistic support for individuals living with terminal illness and their caregivers. Some individuals receiving hospice services experience a slower decline in health as than expected, resulting in a ‘live discharge’ from hospice. A live discharge affects both patient and caregiver(s).The current study (N=24) explored the experiences of caregivers of adults with dementia who experienced a live discharge from hospice. Findings emphasize the comprehensive services covered under the Medicare Hospice benefit and those lost after a live discharge. Implications for social workers supporting caregivers are discussed, including the need to view the patient-caregiver unit during a live discharge.     

Group Work with First Episode Schizophrenia Clients

ABSTRACT

Group work with first episode schizophrenia clients is an effective way of improving ego functioning, building adaptive coping skills, and addressing the painful feelings associated with learning of this diagnosis. First episode schizophrenia clients are typically in their late teens to late twenties, and confront the cognitive disability, the stigma and the loss of social roles and statuses at a developmentally difficult stage of emotional growth. The dynamic processes by which cohesive groups reduce isolation, build self-esteem, and provide peer support are illustrated with case material. The group work consists of integrating psychoeducation with clients' concerns in order to provide optimal adjustment to the disease. The groups described in this article are structured within a continuing care team treatment model in a medical facility, but the group work discussed may be utilized in a variety of settings.     

Coping Strategies and Caregiving Outcomes Among Rural Dementia Caregivers

We studied the coping styles by which family caregivers living in rural areas of Alabama deal with the demands of caring for an older relative with dementia. Data were obtained from a sample of 141 caregivers through the random-digit dialing telephone survey. Two coping styles were identified: deliberate coping and avoidance coping. Deliberate coping was related to higher life satisfaction scores and, avoidance coping was related to lower life satisfaction scores and higher caregiver burden scores. Avoidance coping appeared to moderate the effects of caregiver health on caregiver burden. Social workers should pay greater attention to caregivers with dysfunctional coping styles.     

Dimensions of Structural Disadvantage: A Latent Class Analysis of a Neighborhood Measure in Child Welfare Data

ABSTRACT

Contextual constructs, such as neighborhood structure, may contribute to child welfare involvement. Secondary data analysis is used with the nationally representative, longitudinal National Survey of Child and Adolescent Well-Being-II (N = 5,872). This study employs latent class analysis (LCA) to identify the number of classes needed to explain the distribution of caregiver responses on the Community Environment Scale. LCA is ideal for this study to identify meaningful groups of caregivers involved with child welfare using neighborhood risk factors. Three latent classes are identified: high social order/medium social capital; high social order/low social capital; low social order/low social capital. Multinomial logistic regression tests whether there are significant differences across the classes, partially validating the LCA that poor, minority caregivers live in neighborhoods with lower social order and capital. Understanding neighborhoods as “high” versus “low” risk may not fully illuminate contextual risk factors in order to develop neighborhood-based interventions. This study reveals that there is a third group of caregivers who reside in places with higher social order but lower social capital. Social capital might be an important factor in preventing child maltreatment. Future work is needed to understand additional individual and neighborhood characteristics that predict membership in each class.     

Common Ground: The Development of a Support Group for Survivors of Homicide Loss in a Rural Community

ABSTRACT

Losing a loved one from human-perpetrated violence can lead to a debilitating process of stigma-generated isolation and trauma. Layers of social services are needed to support surviving family members, all secondary victims of homicide. Although urban populations have enriched access to victims-of-crime services, rural-bound populations often do not. This article describes homicide-specific trauma and the development of a community support group for rural-bound persons suffering homicide loss. The support group process offers potential for real help in areas where few trauma-informed options exist. The authors chronicle their journey of group-work practice with underserved persons coping with homicide loss.