Informal caregivers of cancer patients: perceptions about preparedness and support during hospice care

This study examined the perceptions of preparedness and support of informal caregivers of hospice oncology patients. Respondents included coresiding, proximate, and long-distance caregivers. Thematic analysis was used to analyze the qualitative data from 2 caregiver surveys, one administered prior to the care recipient's death and another completed 3 months postdeath. Respondents (N = 69) interpreted preparedness broadly and identified multiple sources of support including hospice personnel, family, friends, neighbors, and spiritual beliefs. Additionally, informational support, such as education, information, and enhanced communication were considered essential for preparing and supporting caregivers. Implications for social work research and practice are provided.     

Informal Caregivers of Cancer Patients: Perceptions About Preparedness and Support During Hospice Care

This study examined the perceptions of preparedness and support of informal caregivers of hospice oncology patients. Respondents included coresiding, proximate, and long-distance caregivers. Thematic analysis was used to analyze the qualitative data from 2 caregiver surveys, one administered prior to the care recipient's death and another completed 3 months postdeath. Respondents (N = 69) interpreted preparedness broadly and identified multiple sources of support including hospice personnel, family, friends, neighbors, and spiritual beliefs. Additionally, informational support, such as education, information, and enhanced communication were considered essential for preparing and supporting caregivers. Implications for social work research and practice are provided.     

Residential Respite Care: The Caregiver's Last Resort

Understanding the beliefs that caregivers of people with dementia have in regard to the use of residential respite may inform strategies to address low service utilisation. In this article, the application of theory in qualitative research with 36 caregivers provides insight into why most delay service use. Although some believe that service use may increase caregiving longevity, others position service use in conflict with normative values, and may hold beliefs that negative outcomes will result from utilisation. To address caregivers' beliefs to support service use, improvements are required to service promotion, as well as to models of care.     

Residential respite care: the caregiver's last resort

Understanding the beliefs that caregivers of people with dementia have in regard to the use of residential respite may inform strategies to address low service utilisation. In this article, the application of theory in qualitative research with 36 caregivers provides insight into why most delay service use. Although some believe that service use may increase caregiving longevity, others position service use in conflict with normative values, and may hold beliefs that negative outcomes will result from utilisation. To address caregivers' beliefs to support service use, improvements are required to service promotion, as well as to models of care.     

Go to the Hospital or Stay at Home? A Qualitative Study of Expected Hospital Decision Making Among Older African Americans With Advanced Heart Failure

To address the need for more information concerning hospital decision making, we conducted in-depth interviews among African Americans with heart failure and their family caregivers (n?=?11 dyads). Using a case scenario, we asked participants about their anticipated hospitalization decisions. Most patients indicated that they would seek care to avoid further deterioration or death from their worsening condition. Many family caregivers anticipated having an active influence on hospitalization decisions. Findings suggest that social workers should encourage the development of adequate home-based services, recognize diverse communication styles, and use this information to facilitate medical decision making by these patients and their caregivers.     

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.     

Children with an imprisoned parent: children's and caregivers' narratives

Previous studies have found that children may experience adverse effects from parental imprisonment. However, little research concerning this issue from children's perspectives has been undertaken in Hong Kong. In order to fill the knowledge gap, this study aims at exploring the challenges and resilience of children with a parent in prison. Nine children aged between 9 and 11 years with a parent in prison, and their caregivers, were interviewed. Their life experience and feelings during parental imprisonment were explored. The caregivers were asked about changes in the children's behaviour and resilience in the children. Children reported that they experienced academic stress and psychological distress, including sadness and problems in having to conceal their parent's imprisonment. They benefited through positive thinking, holding religious beliefs and talking to trusted persons. For caregivers, children's conduct problems, psychological distress and suppression of feelings were reported as the challenges children faced, while object hitting for venting emotion, religious beliefs and engagement in activities were reported as helping children to cope. The article concludes by making a number of recommendations concerning the provision of services, including the establishment of mutual-aid self-help groups, mentoring programmes and programmes promoting the importance of positive thinking for the children, and trainings for caregivers on understanding children's needs, as well as public education on the social stigma of parental imprisonment.     

Advance Directives Among Korean American Older Adults: Knowledge,Attitudes, and Behavior

The study objective was to explore knowledge, attitudes, and behavior about advance directives and how cultural values influence these beliefs. Three focus groups with 23 Korean American older adults were conducted. Advance directives were seen as helpful for ensuring that preferences for unwanted end-of-life treatment are honored and for relieving the decision-making burden on family members. However, some viewed completing advance directives as contrary to focusing on living. Culturally competent education about advance directives for Korean American older adults is necessary to help them make informed decisions about end-of-life care and informing family and health care providers of these preferences.     

An Ecological Understanding of Caregiver Experiences in Palliative Care

Palliative care is specialized health care to improve quality of life for patients with serious illness and their families through prevention and relief of suffering. A Palliative Care Institute was held in western Washington to capture community voices about diverse needs, strengths, and opportunities for improvement of palliative care. Researchers employed qualitative methods to obtain thematic data, provide real-time analysis, and engage in a multivoting technique to reflect stakeholder interest in individual themes and prioritize larger group interests. Bronfenbrenner’s ecological systems framework was used to explore caregiver experiences. Within the microsystem, caregivers reported difficulties in interactions with medical providers as a key challenge. Within the mesosysytem, interactions between patients and medical providers and the impact on caregivers were explored. Within the exosystem, caregivers reported lack of control over the schedules of personal care staff. Macrosystem influences included impact of local culture on the development of palliative care services. Chronosystem influences include de-medicalization of childbirth and its impact on perceptions of palliative care. Implications include the need for social workers to be proactive in fostering trust and effective communication between care providers and caregivers, and the demand for health care provider training in communication with patients and families.     

Impacts of media on sexual behaviour and relationships among youth in foster care

Youth in foster care (YFC) are at high risk of negative reproductive and other health outcomes and may be especially vulnerable to negative impacts of media due to early adversity and a lack of stable caregiver relationships. The aim of this project was to explore how access and exposure to media impacts YFC in order to inform future research in this realm and promote resilience in this understudied population. We conducted semistructured interviews with YFC ages 15–21 (n = 22) and focus groups with foster caregivers (n = 86). We used thematic analysis to analyse data for themes related to media. Youth and caregivers described four main themes: (a) impacts of media on youth norms and attitudes, (b) impacts of media on youth behaviour, (c) impacts of youth exposure to pornography, and (d) caregiver monitoring and mediation of media. Data from this study indicate that media has unique, important effects on YFC norms and behaviours, including sexual behaviours. Foster caregivers encounter multiple barriers to monitoring and mediating media use for YFC. Further research is needed to explore differential effects of media on YFC versus non‐YFC in order to develop effective interventions and mitigate potential negative effects of media.     

What Is Known About Dementia Care Recipient Violence and Aggression Against Caregivers?

Aggression is a known behavior in dementia, but there is little in the literature about risk to home-based caregivers in situations where severe aggression is present. This article examines this issue with a focus on what is known and where further research is needed. Rates of severe aggression by dementia care recipients against caregivers are estimated at greater than 20%, and may be the strongest predictor of nursing home placement. Measures containing both assessment of behavior and objective measures of caregiver trauma are needed, along with interventions aimed at educating and protecting caregivers while respecting communicative properties of behavior.     

Informal Caregivers of Institutionalized Dementia Residents

When older adults are placed in nursing homes, care- giving responsibility continues, despite long held beliefs to the con- trary. Although the American family is in transition, bonds of care- giving and of filial responsibility are strong and persist into old age. Knowledge about characteristics of caregivers who have actually placed their relative in a nursing home is limited. The purpose of this study is to examine whether demographic and facility-related char- acteristics as well as knowledge about dementia and participation in support groups and workshops are signif~cant predictors of burden in caregivers of institutionalized dementia residents. Sixty-seven per- cent of caregivers of residents in a dementia unit in a nursing home participated in the study. Overall, the regression explained 68% of the variance in burden and was highly simcant statistically. In- formation gained from this study will assist social workers in mak- ing referrals to nursing homes or in direct practice with cognitively impaired nursing home residents and their families.     

Unmet Home Care Service Needs of Rural Older Adults With Alzheimer's Disease: A Perspective of Informal Caregivers

This study assessed unmet service needs of rural older adults with Alzheimer's disease (AD) and identified factors that were related to these needs. Data were collected from 109 informal caregivers of AD patients. Over half of the patients experienced unmet service needs in 1 or more areas of activities of daily functioning. Informal caregiver burden and patient's gender and functional status were significantly related to patients' unmet service needs. Patients' use of formal services was marginally related to their unmet service needs. To better address patients' service needs, a comprehensive needs assessment should be conducted with both patients and their caregivers.     

Linkages between Children's Beliefs about the Legitimacy of Aggression and Their Behavior

The purposes of this study were to learn whether children's beliefs about the legitimacy of aggression can be reliably assessed and whether these beliefs relate to children's everyday social behavior with peers, as well as their responses to hypothetical ambiguous provocation situations. Fourth- and fifth-grade students ( n = 781) responded to a 16-item questionnaire designed to measure children's beliefs about the legitimacy of aggression. Children's behavioral orientation was assessed using two methods: (1) children's responses to ten hypothetical situations involving ambiguous provocation, and (2) peer evaluations of children's aggressive, withdrawn, and prosocial behavior. Results indicated that children's beliefs about the legitimacy of aggression were reliably measured. Furthermore, results from both measures of behavioral style showed that children who believed strongly in the legitimacy of aggression were more aggressive, less withdrawn, and less prosocial. The findings suggest that one focus of efforts to decrease children's aggression should be the modification of their beliefs about the legitimacy of aggressive actions.     

From Narcissistic Exploitativeness to Bullying Behavior: The Mediating Role of Approval‐of‐aggression Beliefs

This study examined the role of approval‐of‐aggression beliefs in the relationship between narcissistic exploitativeness and bullying behavior in an Asian sample (N = 809) comprising elementary children and middle school adolescents. Narcissistic exploitativeness was significantly and positively associated with both bullying behavior and approval‐of‐aggression beliefs, and approval‐of‐aggression beliefs was significantly and positively associated with bullying behavior. Additionally, findings indicated that approval‐of‐aggression beliefs was a statistically significant mediator and 53 percent of the total effect of narcissistic exploitativeness on bullying behavior was mediated by approval‐of‐aggression beliefs. Approval‐of‐aggression beliefs did not moderate the association between narcissistic exploitativeness and bullying behavior. There are important theoretical implications as well as implications for prevention and intervention efforts targeting aggressive, bullying behavior among children and adolescents.     

Caregiving Youth Knowledge and Perceptions of Parental End-of-Life Wishes in Huntington’s Disease

Knowledge of patient end-of-life (EOL) wishes and discussions are vital for family caregivers, including children and youth who may be in caregiving roles (“young carers” or “caregiving youth”). However, little is known about caregiving youth awareness and perceptions of EOL issues. This study sought to explore caregiving youth knowledge of EOL wishes and their willingness for EOL discussions. Face-to-face interviews with 40 caregiving youth ages 10–20, who have a parent with Huntington’s disease (HD), provided information about their knowledge of the presence of their ill parent’s living will (LW) and durable power of attorney for health care (DPAHC), and willingness to talk with the parent about EOL choices and possibility of death. Less than one-half of the participants were aware of the parent’s LW or DPAHC. Content analysis revealed themes in reasons to want or not want EOL discussion with the parent: respect for the parent’s wishes, caregiving youths’ opinion not valued, and avoidance of EOL issues. Themes also included reasons to not want discussion with the parent about possibility of death: protecting the parent, parent in denial, parent not ready, and realization of the terminal outcome. Findings suggest HD patients and their caregiving youth need support for open EOL discussions, and could benefit from educational programs and support groups around EOL issues.     

A comparison study between American and Chinese societies: home caring for elders with Alzheimer’s and memory impairments

Of all diseases associated with aging, Alzheimer’s disease and memory impairments are the most stressful for the family and home caregivers. The purpose of this study is to explore the dynamics of care-giving for Alzheimer’s and memory-impaired patients in both countries and to compare the differences and similarities between the feeling of burden and caring values of the home caregivers for elders in both societies.     

Statewide Implementation of “Reducing Disability in Alzheimer’s Disease”: Impact on Family Caregiver Outcomes

There have been few replications of efficacious evidence-based programs for dementia caregivers offered in community settings. This study highlights the replication of the evidence-based Reducing Disability in Alzheimer’s Disease program and explores the changes in outcomes for participating caregivers and whether those changes are related to level of program utilization. With data from 219 caregivers, regression results indicate that more exercise sessions are associated with a decrease in caregiver strain and more behavior management sessions are associated with a decrease in unmet needs after 3 months. Findings demonstrate how a multicomponent program can have positive benefits for family caregivers.