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.     

The Potential of Information Technology to Navigate Caregiving Systems: Perspectives from Dementia Caregivers

Technologies designed to support caregivers of adults with Alzheimer’s disease and related dementias (AD/RD) have been developing at an increasingly rapid pace. However, little remains known about caregivers’ perspectives on how technologies can and should help them navigate larger service systems they interact with to engage in caregiving. This study involved in-depth interviews and a beta test of an AD/RD caregiver app to learn more about how they currently use technologies and how potential technological features and functions can best meet their needs. Thematic findings suggest a conceptual model for designing AD/RD caregiver technologies. The findings suggest that eHealth and individual technologies may not fully meet the needs of caregivers as they navigate the larger systems within which they provide care. Findings highlight the need to develop technologies for caregivers that are effective, easy to use, and more widely disseminated – especially for caregivers from disadvantaged backgrounds.     

Alzheimer's Aggression: Influences on Caregiver Coping and Resilience

This study assessed impact of Alzheimer's patients' aggressive behavior (AD aggression) on caregiver coping strategies (task-, emotion-, and avoidance-focused) and caregiver resilience, and examined whether coping strategy moderated the AD aggression–caregiver resilience relationship. Informal caregivers across Louisiana (N?=?419) completed surveys with measures of demographics, AD aggression, caregiver coping strategies, and caregiver resilience. Task-focused coping positively related to resilience. Aggression negatively predicted caregiver resilience. Emotion- and avoidance-focused coping strategies separately interacted with aggression and increased its negative relationship to caregiver resilience. Task-focused coping showed no moderation. Implications for social work professionals are discussed.     

Patterns of family service needs and caregiver–child relationships among families at risk of child welfare involvement

Caregivers at risk of involvement in the child welfare system report high levels of need for multiple types of services, and their children have high levels of mental health need. Caregivers from families with more service needs, as well as unmet needs, are less likely to be engaged with child welfare services and may have diminished capacity to care for their child. This study takes a family‐centered approach by using latent class analysis to identify patterns of both caregiver and child service needs among families at risk of child welfare involvement. Using data from the LONGSCAN consortium (N = 957), we identified 4 classes of service needs among child welfare‐involved families. We then examined differences between the 4 classes based on demographics, maltreatment histories, unmet service needs, and caregiver–child relationship. The caregivers were split fairly evenly among the 4 classes: low needs, medical needs, poverty support, and high needs. There were significant differences between classes on assessed variables, with higher levels of needs associated with diminished caregiver–child relationships.     

Caregiver involvement in behavioural health services in the context of child welfare service referrals: a qualitative study

Human service agencies serve a growing number of adults with behavioural health needs. Despite these agencies' key role in identifying need and facilitating services, many individuals do not receive care or end services prematurely. Few studies have explored the experiences of families referred to behavioural health services by such agencies or the extent to which families' perceptions of service need align with those of treatment providers and frontline workers. This study presents findings from a qualitative study of caregivers involved with child welfare agencies who were referred to behavioural health services. Researchers reviewed agencies' case records and conducted in‐depth interviews with 16 caregivers, 9 child welfare caseworkers and 12 behavioural health treatment counsellors. Findings suggest that when deciding to engage in services, caregivers weigh not only their individual and family behavioural health needs but also potential agency intervention, including loss of child custody. Many professionals reported that involvement with a child welfare agency hindered the caregiver's disclosure of behavioural healthcare needs. Implications for managers and practitioners are discussed.     

Response Agreement Rates Between Child Welfare–Involved Youth and Their Caregivers

ABSTRACT

Data were collected from 40 youth and 37 caregivers, which represented 57 distinct youth and 20 youth–caregiver dyads to measure the level of agreement between youth self-report and their caregivers on a variety of topics. Topics included: the youth's past placements, service use and needs, experiences in the child welfare system, and the youth's emotional problems and social behaviors. Results indicated high agreement between youth and caregiver proxy related to placement history, service use, the restrictiveness of the current environment, and community safety; results indicated low levels of agreement for youth emotional difficulties and prosocial behaviors. Qualitative data were used to further identify some of the differences noted. Overall, the findings support prior research that shows higher agreement within youth–caregiver dyads for objective measures as opposed to subjective and private ones. Implications for future research are discussed, and methodological challenges related to this study are identified.     

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.     

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.     

The Influence of Service Factors on Spousal Caregivers' Perceptions of Community Services

The literature clearly denotes that spouses differ from other family members in their reactions to caregiving, their patterns of service use and their assessment of specific services. Yet, despite their prevalence as caregivers, little is known about their unique perceptions of community services and the factors that impact their experiences with the service system. The purpose of this study was to explore the relative influence of (a) spouses' personal factors (e.g., gender, family support) and (b) service factors (e.g., one-on-one professional support), on spousal caregivers' perceptions of community services. The study employed a survey design with a sample of 73 spousal caregivers caring for their partners with dementia at home.

This study found that spousal caregivers have more negative perceptions of the service system when their in-home workers are not informed about their spouses' likes, dislikes and routines. This service factor was the most significant predictor of caregivers' service perceptions. The study further found that most spousal caregivers receive fewer than five consultations from a non-medical professional over a one year period. While spouses longed for more professional support, this service factor was not uniquely associated with service related stress. The policy and practice implications of these findings are discussed.     

The Elder Latino Population in Holyoke,MA

Abstract

Holyoke's elderly Latino population's needs, as well as their patterns of service utilization, were explored through detailed interviews of 13 individual elders and a focus group of an additional 10 participants. The research uncovered a gap in the web of resources available, with some services, such as medical care, functioning well. However, there continue to be unmet needs, particularly in the areas of transportation, social and recreational activities, and sense of safety. Negative perceptions of aging and complaints of anxiety, depression, and boredom are also an area of concern.

The barriers to use of services were also explored. Recommendations for the enhanced provision and utilization of services, many suggested by the elders themselves, are offered. Implications for social work research and policy on, and practice with, Latino elders are discussed.     

Unmet needs in self-directed HCBS programs

ABSTRACT

Unmet need for long-term services and supports has been linked to a variety of harmful health outcomes. One suggested strategy for ameliorating unmet need is to give participants control of a budget and let them construct individualized plans. The evaluation of the Cash and Counseling controlled experiment (CCDE) documented a marked reduction in unmet need when compared to traditional agency-based solutions, but it also showed significant unmet needs remained. This paper reanalyzes 76 case studies from the CCDE to, for the first time gain an understanding of what those unmet needs are, who sees them, and what participants, caregivers and support brokers think might reduce this problem. Using a collective or multiple case study approach to understand this phenomenon, unmet needs were sorted into five categories using real life experiences of respondents. Unmet needs for assistance in managing the employer and budget tasks of self-direction were also captured.This paper discusses situations where the clinician researchers documented needs that were not expressed by the care recipients and provides a picture of where and why unmet needs remain.The paper concludes with strategies for reducing unmet needs and training future social workers.     

Chinese American Family Caregivers’ Perception of Program Use and Caregiver Stress

Caregiver programs provide specialized services and resources to reduce caregiver stress and improve family quality of life and health. Although there are resources and community services available, Chinese American family caregivers’ perceptions on caregiver programs and how specific services help to viably reduce their stress has yet to be examined. An in-depth interview was conducted with four Chinese American family caregivers in exploring their caregiving experiences and program service use; two of the caregivers were spouses and two were adult children. Content analysis revealed that their value of familial piety, and their need to ameliorate caregiver stress fueled their interest in new interventions to improve their quality of life and health. Spousal caregivers and adult children caregivers disclosed different needs due to caregiving, and adult children caregivers were less resistant to new interventions. The results of this study fill the knowledge gap on Chinese American family caregivers’ perception of caregiving in a cultural context as well as their needs. Suggestions for future research are to better understand the effectiveness of the specific services within caregiver programs that are effective in reducing caregiver stress among Chinese American family caregivers.     

Unmet needs at the end of life: perceptions of hospice social workers

Among persons at the end of life, it is important to understand whether the needs of patients are being adequately addressed. In particular, in hospice settings where the emphasis is on comfort care and quality of life, we know little about the presence of unmet needs. The purpose of this study was to examine the experiences of hospice social workers in working with hospice patients who had unmet needs at the end of life. Surveys were mailed to hospice social workers (N = 212) in two Southeastern states with a response rate of 36%. Results revealed that hospice social workers perceived patients to experience a wide variety of unmet needs-more commonly at the time of admission than during subsequent patient interactions. The most common unmet need reported at both times was a decreased ability to participate in activities that make life enjoyable. In situations where unmet needs exist, social workers reported that the most common perceived reasons were patient- related psychosocial issues and family conflict/issues. Additionally, a variety of interventions were used to address unmet needs, but a large number of barriers appear to impact outcomes in the cases. Results suggest that hospice patients experience a number of unmet needs, many of which are potentially treatable problems and concerns. Hospice professionals must continue to seek ways to assess and intervene effectively with patients who have unmet needs.     

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.     

Informal kin caregivers raising children left behind in rural China: Experiences' feelings' and support

The well‐being of children in informal kinship care and their caregivers is a growing concern globally. This study explored the lived experiences of 23 kin caregivers raising children left behind in rural Northeast China while their migrant parents worked and lived in cities. The findings show that the expected authority and responsibility caregivers carry sometimes conflict with their social role of being children's grandparents. Caregivers' feelings about and understandings of these roles are shaped through their social interactions in local communities. In view of their situation and caregivers' self‐conscious attitudes towards utilizing local resources' future formal service provision and social support should take caregivers' viewpoints into account. These views are embedded in and shaped by their rural living context and relationships with community members who influence caregivers' perceptions and child rearing practices.     

Palliative care patients' experiences of healthcare treatment

Kennett C, Payne M. Palliative care patients' experiences of healthcare treatment Int J Soc Welfare 2010: 19: 262–271 © 2009 The Author(s), Journal compilation © 2009 Blackwell Publishing Ltd and the International Journal of Social Welfare. This article reports on a thematic analysis of the opinions of 34 palliative care patients about medical and healthcare treatment expressed in comments, narratives and discussions during a series of facilitated group discussions undertaken as part of training events for medical students. Palliative care patients often have long healthcare careers, which enables them to compare different professionals and services, thus offering a more powerful and complex analysis of patient experience than that obtainable from analysis of complaints or satisfaction surveys, and permits some understanding to be obtained of the attitudes that condition evaluations of services. The patients balanced negative views with positive experiences. They appreciated open, listening, equal and friendly relationships with professionals in which careful explanation fostered their confidence in the overall service. They criticised inflexible services that did not consider their broad needs, and in which relationships with professionals were characterised by busy‐ness and professional distance.     

The role of informal caregivers in the well‐being of orphans in Botswana: a literature review

With the orphan population escalating, communities continue to rely on relatives to provide care to orphans. Therefore, there is a need to explore the role of caregivers with regard to the well‐being of orphans, the challenges they face, as well as how they could be empowered to be more responsive to children's needs. The paper acknowledges that informal caregivers play an important role in the lives of orphans. The paper also concedes that, in the process, caregivers are faced with challenges which make it difficult for them to fulfil their responsibilities and roles. As a result, they sometimes act as sources of stress to orphans, which eventually complicate the children's adjustment to the loss of their parents. Lastly, the paper paves the way to ensuring that challenges faced by informal caregivers are addressed in a manner that will make them more supportive to orphans.     

Rethinking Needs Assessment in Planning Services for Older Adults

ABSTRACT

Needs assessments are widely used in the field of aging, and are considered valuable tools for planning service responses to unmet and undermet needs of older adults. This article describes a comprehensive needs assessment of Bermuda's older population and presents some of its findings to illustrate concerns about needs assessments that emerged from this experience. We suggest that even when needs assessments are carefully planned and adhere to generally recognized best practice principles, they may not be able to fully provide desired information. A revision of key assumptions about needs assessment is offered for researchers, planners, and community workers.     

Assessing Caregiver Information Needs

The type of information needed by caregivers of Alzheimer patients will vary, depending upon the stage of the caregiver's emotional acceptance of the illness and on the patient's condition. A brief questionnaire was developed to identify caregiver information needs.     

Poetry

This paper describes the services and procedures of the Philadelphia Geriatric Center's multi-service respite service demonstration project for 305 caregivers of elderly Alzheimer's patients. Selected sections of data are reported that provide information needed by professionals for planning and delivering such services. Of all caregivers who were offered respite, 52% actually availed themselves of the services. Of those, two-thirds chose in-home services, with smaller proportions using day care and institutional respite. Reasons for such choices and for the non-use of respite, the advantages and problems of different types of respite, and implications for development of respite programs are discussed.