"Between the devil and the deep blue sea": the beliefs of caregivers of people with dementia regarding the use of in-home respite services

This article details results from qualitative research with caregivers in regard to the beliefs they associate with the use of in-home respite services. Outcomes are perceived by caregivers in relation to care recipient personal safety and the avoidance of negative consequences through the provision of supervision in the caregiver's absence. Use of in-home services challenges normative beliefs for some caregivers, particularly for spousal caregivers who feel it is their role to provide assistance that is needed in the home. Likewise, perceived inflexibility and the inability of in-home services to provide responsive and personalized care make the use of in-home services difficult and may inform control beliefs. Implications are discussed in relation to community care pathways and the promotion and development of in-home respite services to better target caregiver beliefs and respond to caregiver perceived needs.     

“Between the Devil and the Deep Blue Sea”: The Beliefs of Caregivers of People With Dementia Regarding the Use of In-Home Respite Services

This article details results from qualitative research with caregivers in regard to the beliefs they associate with the use of in-home respite services. Outcomes are perceived by caregivers in relation to care recipient personal safety and the avoidance of negative consequences through the provision of supervision in the caregiver's absence. Use of in-home services challenges normative beliefs for some caregivers, particularly for spousal caregivers who feel it is their role to provide assistance that is needed in the home. Likewise, perceived inflexibility and the inability of in-home services to provide responsive and personalized care make the use of in-home services difficult and may inform control beliefs. Implications are discussed in relation to community care pathways and the promotion and development of in-home respite services to better target caregiver beliefs and respond to caregiver perceived needs.     

About the culture of in-home nursing

As nurses assume a multitude of roles in health care, public and professional perspectives of nursing vary and, consequently, both clients and providers, including nurses themselves, do not fully appreciate the nature of in-home nursing. In this study ethnographic methods were used to capture participants' perspectives of the actions, practices, values, and beliefs that collectively comprise the culture of nursing in the context of home nursing services in rural Australia. Findings reveal how nurses' and clients' experiences of in-home nursing differ from the textbook picture, and how interactions between nurses' practice approaches and care recipients' enactment of the client role create a cultural context affecting clients' health and well-being. Given similar findings in other countries, the insights gained merit consideration by all professionals concerned about refining home care service approaches in keeping with currently espoused valuing of client-centered, empowering care partnerships.     

Expansion and Merger of Home Care Agencies

This article analyzes the extent to which expansion and the merger of existing home care agencies is an effective strategy for improving in-home services for persons who require long-term care. Information obtained from nine comprehensive home care providers suggests that movement to a new service structure is impeded by (1) limitations and fragmentation of existing funding sources; (2) the traditional separation between agencies that deliver medical care and those that provide health-supportive "social" services; and (3) staff's concern about the impact that organizational changes may have on established roles, functions, relationships, and work conditions. The analysis and supporting evidence show, however, that care providers are more effective and efficient following expansion or merger. After reorganization, agencies appear to be more successful in reaching greater numbers of potential clients, in providing appropriate, well-coordinated services, and in making more effective use of existing resources. Unfortunately, inadequate funding has so constrained the development of in-home services, that expansion or merger of existing providers is, at best, an interim solution. Reorganization of the service system, under existing limitations, will achieve only marginal improvements in services and in thepopulation "at risk." Home care will emerge as a viable resource only when there is a significant expansion in funding, service benefits, and the numbers of persons eligible for a funded program of in-home assistance.     

Realities of respite care.

Respite care in the form of day care centres, in-home respite and institutional care, has been the cornerstone of care for the disabled elderly. Evidence for its effectiveness in helping carers or disabled clients is hard to come by. In this paper, a proposition is put forward for a carefully designed study to answer some of the important points often raised by the providers of such services.     

Factors related to client satisfaction with community-based respite services

The goal of this study was to identify factors related to client satisfaction with respite services. Data were analyzed from interviews with 1183 family caregivers participating in the AoA Demonstration Grants to States program. Two groups of potential explanatory variables were examined: (1) characteristics of client families, and (2) caregivers' perceptions of service delivery. Separate regression models were estimated for users of in-home respite and adult day care. Factors related to satisfaction with in-home respite included elder's ADL, ethnicity, caregivers' expectations for what the respite worker would and would not do, access to services, and the amount of red tape. Factors related to satisfaction with adult day care included the caregiver's age and health, ethnicity, caregivers' expectations for what the respite worker would and would not do, access to services, and the amount of red tape. Differences be- tween the models are discussed in the context of how providers can improve client satisfaction with respite services.     

THE INFLUENCE OF INCOME ON THE EXPERIENCE OF INFORMAL CAREGIVING: POLICY IMPLICATIONS

Examining the need for an eldercare policy is relevant and timely because the population is aging, a focus of care has shifted from institutional to community based, and informal caregivers, primarily women, are increasingly pressured to be responsible for eldercare. The purpose of the study is to examine the differences in the experiences of low-income and those who are not low-income informal caregivers. Three hundred questionnaires were mailed to past and present home care clients and 58 questionnaires were returned (19% response rate). This research revealed that low-income caregivers have increased needs for support and education from those who can afford to pay for their support services. Low-income caregivers experience significantly greater caregiver distress than do caregivers who are not low income. The unique needs of low-income caregivers must be considered in the formation of Canadian eldercare policy as increased health care privatization promotes the growing inequality in health care provision.     

The influence of income on the experience of informal caregiving: policy implications

Examining the need for an eldercare policy is relevant and timely because the population is aging, a focus of care has shifted from institutional to community based, and informal caregivers, primarily women, are increasingly pressured to be responsible for eldercare. The purpose of the study is to examine the differences in the experiences of low-income and those who are not low-income informal caregivers. Three hundred questionnaires were mailed to past and present home care clients and 58 questionnaires were returned (19% response rate). This research revealed that low-income caregivers have increased needs for support and education from those who can afford to pay for their support services. Low-income caregivers experience significantly greater caregiver distress than do caregivers who are not low income. The unique needs of low-income caregivers must be considered in the formation of Canadian eldercare policy as increased health care privatization promotes the growing inequality in health care provision.     

Understanding an Aboriginal and Torres Strait Islander child’s journey through paediatric care in Western Australia

Objective: To explore caregiver perspectives of their children’s journey through the specialist paediatric service, the Aboriginal Ambulatory Care Coordination Program (AACC), and non‐AACC services at the Perth Children’s Hospital. Methods: Eighteen semi‐structured interviews with families of Aboriginal children were completed. Indigenous research methodology and a phenomenological approach guided data collection and analysis. Results: Four key themes were identified from interviews: hospital admissions, discharge and follow‐up outpatient appointments; communication; financial burden; and cultural issues. Our findings suggest Aboriginal children and their caregivers using the AACC program had more positive and culturally secure experiences than those using non‐AACC services. However, barriers relating to health providers’ understanding of Aboriginal cultural issues and lived experience were commonly discussed, regardless of which service families received. Conclusions: Australian Aboriginal children have an increased use of tertiary hospital care compared to non‐Indigenous children. Healthcare programs specifically designed for Aboriginal children and their families can improve their experience of care in hospital. However, improvements in cultural awareness for other hospital staff is still needed. Implications for public health: Dedicated Aboriginal programs in mainstream services can successfully improve cultural care to their clients, which is fundamental to improving service delivery for families.     

The evaluation of the National Long Term Care Demonstration. 1. An overview of the channeling demonstration and its evaluation.

The channeling demonstration sought to substitute community care for nursing home care to reduce long-term care costs and improve the quality of life of elderly clients and the family members and friends who care for them. Two interventions were tested, each in five sites; both had comprehensive case management at their core. One model added a small amount of additional funding for direct community services to fill the gaps in the existing system; the other substantially expanded coverage of community services regardless of categorical eligibility under existing programs. The demonstration was evaluated using a randomized experimental design to test the effects of channeling on use of community care, nursing homes, hospitals, and informal caregiving, and on measures of the quality of life of clients and their informal caregivers. Data were obtained from interviews with clients and informal caregivers; service use and cost records came from Medicare, Medicaid, channeling, and providers; and death records for an 18-month follow-up period were examined.     

Interpersonal Relations Between Health Care Workers and Young Clients: Barriers to Accessing Sexual and Reproductive Health Care

Interpersonal relations between health care providers and young clients have long being cited as an important element for improving client up take of services, satisfaction and overall health outcomes. In an era of HIV and AIDS this forms a critical determinant to young people accessing sexual and reproductive health care. This study explores to what extent interpersonal relations form a barrier to young peoples access to and satisfaction of health services. The study draws on data from 200 client exit interviews and four in-depth interviews conducted with university students and university health care staff in Kwazulu-Natal, South Africa. While young people are aware of the importance of utilising STI, HIV and family planning services they experienced barriers in their relationship with providers. This served as a deterrent to their use of the health facility. Adequate training in interpersonal relations for youth-friendly service provision is essential in helping overcome communication problems and enabling providers to interact with young clients at a more personal level.     

Dimensions of patient empowerment: implications for professional services marketing

The focus on preventive health care and self care coupled with the public's improved access to health care information has pushed patient empowerment to the forefront. This has prompted several medical scholars to identify and stipulate the multiple dimensions of patient empowerment. These dimensions (patient participation, patient control and patient education) have already been recognised on an individual basis by service marketers. What is proposed here is to consider all three dimensions simultaneously to manage clients of professional services that demand a significant amount of client input.     

Perspectives of Treatment Providers and Clients with Serious Mental Illness Regarding Effective Therapeutic Relationships

This study explores the nature of clinical therapeutic relationships between mental health treatment providers and high-need clients with serious mental illness who had recently discontinued treatment. Semi-structured qualitative interviews of 56 clients with serious mental illness who had recently discontinued care and 25 mental health treatment providers were completed. Both clients with serious mental illness and treatment providers emphasized the importance of client-focused goal setting, time and availability of treatment providers, a caring approach, and trust and honesty in the relationship. However, clients with serious mental illness placed greater emphasis on goals involving tangible services, a notable area of discord between the two groups. Individuals with serious mental illness and treatment providers agreed regarding several key elements to a positive clinical relationship. Further attention to client goals related to tangible services may serve to improve relationships between treatment providers and high-need clients with serious mental illness.     

An investigation of the disabled elderly in a geriatric health services facility in an urban area of Japan and attitudes of their family caregiver

We investigated characteristics of 72 clients in a geriatric health services facility (hereafter called GHSF), conditions of their family caregivers, and the factors associated with the caregivers choice of discharge destination. Most of the clients were elderly females with a low degree of independence, and dementia was observed in about 60% of them. The clients had children, but many of them lived alone before admission to the GHSF. The rate of admission from hospitals was high (54%), and that of discharge to hospitals was also high (50%). Sixty-seven percent of the clients stayed in for a period of over six months. Most of the family caregivers were daughters or daughters-in-law, and considered themselves to be healthy. Sixty-three percent of them had jobs, and most of the caregivers had no sub-caregiver to assist them. The family caregivers desired the client's home (19.4%), hospital or another GHSF (54.2%), or nursing home (26.4%) as the discharge destination from the GHSF. According to Hayashi's quantification theory type II, the factors related to the home as the discharge destination desired by client's family caregivers are as follows; caregivers used formal home public health nursing visit service before entering the GHSF, the job of the caregiver was a part-time job, the client did not show dementia, the period of care experience was shorter than one year.     

Characteristics of the clients in a geriatric intermediate care facility located in the suburbs of an urban area and factors related to the discharge destinations desired by family caregivers

Among the clients in a geriatric intermediate care facility located in the suburbs of Osaka and their family caregivers (72 subjects), the characteristics of the clients and their caregivers, and the discharge destination desired by their family caregivers were investigated, and the associated factors were evaluated. 1. Characteristics of the clients. The clients were elderly females with a low degree of independence, and dementia was observed in about 60% of them. The clients had a relatively large number of children, but many of them lived alone before admission. The rate of admission from hospitals was high (54%), and that of discharge to hospitals was also high (50%). Sixty-seven percent of the clients stayed for a long duration of over 6 months. 2. Conditions of the family caregivers. Most of the family caregivers were daughters or daughters-in-law, and considered themselves to be healthy. Sixty-three percent of the caregivers had jobs. However, most of the caregivers did not have sub-caregiver. 3. Factors related to the discharge destination desired by family caregivers. Not many family caregivers (19.4%) wanted them to go back to their homes after discharge, but their preferred discharge destinations were home (19.4%), hospitals (55.5%), and nursing homes (25.1%). The caregivers of single household clients often desired a nursing home as the discharge destination, and those of the clients from a 2- or 3-generation household often desired a hospital. The factors related to the discharge destination desired by client's family caregivers were that the client not show dementia, the job of the caregiver was a part-time job, there was a sub-caregiver, and the client had the experience of home public health nursing visits. This study showed, the percentage of the clients discharged from the geriatric intermediate care facility to their homes was low, and that of the family caregivers who desired their home as the discharge destination was also low. However, the results suggested that leading the discharge destination to the client's home is possible if social resources are provided such as the use of public health nursing services.     

Are there racial differences in attitudes toward hospice care? A study of hospice-eligible patients at the Visiting Nurse Service of New York

Research on African American and white attitudes, perceptions, and knowledge of hospice care has focused predominantly on patients and providers in institutions and community-based care settings. Little is known about patients receiving home health services, despite growing trends toward noninstitutional care in the United States. This study of home health clients who are eligible for hospice, but not currently receiving it, found few differences between racial groups with regard to attitudes about end-of-life care. An alarming proportion of African American and white home health clients held erroneous ideas about hospice care and had not discussed this option with their providers. These findings suggest that increased referrals to home-based hospice care among home health clients depend on the availability and professional dissemination of accurate, spiritually sensitive information.     

Pathways of care-seeking during fatal infant illnesses in under-resourced South African settings

The purpose of this study was to examine care-seeking during fatal infant illnesses in under-resourced South African settings to inform potential strategies for reducing infant mortality. We interviewed 22 caregivers of deceased infants in a rural community and 28 in an urban township. We also interviewed seven local leaders and 12 health providers to ascertain opinions about factors contributing to infant death. Despite the availability of free public health services in these settings, many caregivers utilized multiple sources of care including allopathic, indigenous and home treatments. Urban caregivers reported up to eight points of care while rural caregivers reported up to four points of care. The specific pathways taken and combinations of care varied, but many caregivers used other types of care shortly after presenting at public services, indicating dissatisfaction with the care they received. Many infants died despite caregivers' considerable efforts, pointing to critical deficiencies in the system of care serving these families. Initiatives that aim to improve assessment, management and referral practices by both allopathic and traditional providers (for example, through training and improved collaboration), and caregiver recognition of infant danger signs may reduce the high rate of infant death in these settings.