Contrasting perspectives of parents and service providers on respite care in Queensland,Australia

Abstract

Parent-carers need support to continue to care for their child with significant disability in their home. There has, however, been little evidence that respite interventions have consistent or enduring beneficial effects on carer well-being. This article reports the findings of a qualitative study which adopted an Appreciative Inquiry philosophy to interview parent-carers of children with significant intellectual and/or developmental disabilities on how formal support services have helped them maintain their health and well-being, and disability support staff on how they help such parent-carers foster their health and well-being. We conclude that better communication and collaboration between service providers and users, more targeted training of workers, and embracing a person-centred and family-centred approach to respite services are needed. In addition, clearer definition and communication of the scope of respite services are required to best support families of children with significant disability in their home.     

The Influence of Media and Respondent Characteristics on the Outcome of a Campaign to Recruit Host Families for Adults with Learning Disability

Family-based short break schemes depend on accessing suitablehosts. Recruitment is seen as a major challenge yet there areno published studies that examine this for adult services. Thispaper aims to redress that by describing what type of personresponded to a campaign to recruit hosts for adults with learningdisabilities, and to explore if there is a relationship between(i) the outcome of each enquiry and the respondents and (ii)outcome and how the respondents found out about the service.The study involved a retrospective examination of documentedinformation about each of forty-nine respondents, supplementedwith telephone contact. The respondents were mainly marriedwomen aged thirty to fifty, with two or more children, fromurban settings and who were employed outside the home. Mosthad heard about the service through newspapers and posters.Thirty-nine per cent applied to host. Age, family size, ageof children and location were associated with outcome. Experiencewas an important predictor of outcome. Word of mouth was themost successful means of recruiting. While broad-based advertisingis shown to attract hosts, the results can be maximized by follow-upof those who do not apply immediately. Implications for servicedelivery and research are discussed.     

Strengthening kinship families: scoping the provision of respite care in Australia

Kinship care is the fastest growing form of out‐of‐home care in Australia, as it is in many other countries. The Victorian Government's response has been to establish 18 programmes across the state to provide support to kinship families. The scoping project described here, based on interviews with key programme staff, explores the experiences of the new programmes in providing support, specifically respite care, to kinship families. It has produced a picture, based on qualitative and quantitative data, of how respite care is understood, the perceived respite needs of kinship families, how services are organized and provided, identified barriers to families accessing support, the effect of respite provision and what constitutes optimal practice. The findings establish a basis for a best practice model of service provision for this increasingly significant family type.     

Weighing the Success of a National Alzheimer's Disease Service Demonstration

Summary

As the need for long-term care services within the United States has grown dramatically, Congress has consistently deflected the primary responsibility for such care to state governments, local organizations, and, ultimately, the family. This paper examines the impact of the Alzheimer's Disease Demonstration Grants to States (ADDGS) program, a small federally funded initiative within the context of this trend. Although the demonstration can be deemed a huge success relative to the goals of creating new services for an underserved target population, questions are raised about the merits of the program relative to the exploding need for an effective network of long-term care services.     

Examination of a Psychoeducational Intervention and a Respite Grant in Relieving Psychosocial Stressors Associated with Being an Alzheimer's Caregiver

Alzheimer's disease can be particularly devastating to those who are caring for their loved one with the condition. There have been recent calls for the tailoring of caregiving interventions to examine outcome differences between groups of caregivers and the reporting of effectiveness via longitudinal and specific outcomes. The purpose of this study was to examine 3 interventions (psychoeducational training, a respite voucher-type grant, or their combination) while looking for possible group differences. A total of 367 caregivers participated in the study. Participants completed surveys and questionnaires before the intervention and at a 6-month follow-up. Positive outcomes were found, including lower depression scores, increased support service use, and increased support group usage. Possible effectiveness of the 3 types of interventions and variation among caregiver characteristics are discussed along with implications for future research.     

Sense of Need for Financial Support and Respite Services among Informal Caregivers of Older Americans

ABSTRACT

Financial support and respite services are two of the most frequently reported types of help that caregivers of older adults need. Using an expanded health behavioral model, this study examined the effects of predisposing, enabling, and needs factors on caregivers' sense of need for these two types help. Data were drawn from the 1999 National Long-Term Care Survey and included 1,058 caregiving dyads in the community. The results indicated that caregiver-related factors more than care recipient–related factors affected caregivers' sense of need to seek both types of help. The findings direct to two important implications for long-term care policy for and practice with older adults: improvement of service for caregivers and service delivery systems.     

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.     

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.     

Short breaks for families caring for a disabled child with complex health needs

Data from two research studies concerned with disabled children who have complex health needs were analysed in relation to families' experiences of accessing short breaks (respite) services. Many families experience serious problems finding suitable services which can cater for both their child's complex health needs and their own need for significant levels of support. This paper highlights which services families were using and the difficulties of obtaining a coherent and consistent package of support. Regulatory concerns relating to the piece-meal provision of services and use of children's hospices are raised along with recommendations for improving policy and practice.     

Older Peoples’ Descriptions of Becoming and Being Respite Care Recipients

The number of older people in the western world is increasing. Advancing age creates the need for care, including respite care. The aim of this study is to describe the experience of older people of becoming and being respite care recipients. Admission to respite care is a response to a range of practicalities in the home, such as the need to maintain privacy, dissatisfaction with home care, and deterioration in health. However, the participants in this study had little or no involvement in the decision regarding respite care placement. Activities, training, and medical treatment were found to be important to respite care recipients’ satisfaction with their care.