Beroende eller oberoende? : En kvalitativ studie av hur äldre hjälptagare ser på att ha hjälp och stöd

Dependency or independence? A qualitative study of how elderly home-help recipients regard having help and support Knowledge on elderly people’s understandings of dependence and independence is relatively scarce even though there is plenty of gerontological research on related topics. Although we know how to define and measure different types of dependency, we know, in fact, very little about how elderly home-help recipients themselves regard their situation in terms of dependency, independence and autonomy. This article aims to shed light on home-help recipients’ understandings of these constructs and on how they make sense of their situation. The analysis is based on 29 semi-structured interviews with people between the ages of 77 and 93. The findings show how these home help recipients differentiate between having help and support and being dependent on other people. Through the separation of aspects of these understandings, such as the reason why they accept help and support and how they regard the situation of being helped and assisted, three ways of regarding the situation have been identified, which stress the variability of the social construction of dependency and independence that these elders uphold. Some home-help recipients construct themselves as independent, others as autonomous and able selves, while a third group construct themselves as powerless.

Stressors, mediators, and health care outcomes of home enteral nutrition in family caregivers and their older adult care recipients

Family caregivers manage home enteral nutrition (HEN) for over 77% of an estimated 1 of every 400 Medicare recipients. Increasing usage of HEN in older adults combined with reliance on family caregivers raises concerns for the quality, outcomes, and costs of care. These concerns are relevant in light of Medicare limitations on nursing assistance and non-reimbursement for nutrition services, despite annual costs of over $600 million. This study applied stress process theories to assess stressor, mediator, and outcome variables salient to HEN and caregiving. In-home structured interviews occurred with a multi-ethnic sample of 30 caregiving dyads at 1–3 months after discharge on HEN. Care recipients were aged ≥60 (M = 68.4 years) and did not have dementia. Caregivers were aged ≥21, unpaid, and lived within 45 minutes of care recipients. Caregivers performed an average of 19.7 tasks daily for 61.9 hours weekly. Training needs were identified for 33 functional, care management, technical, and nutritional tasks. Preparedness scores were low (M = 1.73/4.0), and positively correlated with competence, self-rated quality of care and positive feelings, and negatively with overload, role captivity, and negative feelings (Ps < .05). Caregivers had multiple changes in lifestyle and dietary behaviors. Lifestyle changes positively correlated with overload, and negatively with preparedness and positive feelings. Dietary changes positively correlated with number of tasks, overload, role captivity and negative feelings, and negatively with preparedness (Ps < .01). Fifty-seven percent of caregivers aged >50 were at nutrition risk. Care recipients fared worse. Average weight change was −4.35 pounds (P < .001). Physical complications interrupted daily enteral infusions. Water intake was half of fluid need and associated with signs of dehydration (P < .001). Physical and social function was poor, with older subjects more impaired ( P < .04). Those with better prepared or less overloaded caregivers had higher functionality and QOL (P < .002). Complications, type of feeding tube, and caregiver preparedness correlated with frequency of health care utilization (Ps < .05). Efficacy of HEN in older adults requires specialized caregiver training, attention to caregivers' needs, and frequent monitoring from a highly skilled multidisciplinary team including dietitians. ^

Perceptions of the process of care among caregivers and care recipients in Dementia Care Networks

The Dementia Care Networks Study investigated 4 community-based, not-for-profit dementia care networks in Ontario, Canada. Investigators examined whether sociodemographic and health characteristics, type of support network, and amount of service use among care recipients and caregivers (n = 267 dyads) were associated with experiences with care processes. The process-of-care constructs were: family physicians' awareness of services; experiences with health care workers, and assessment and placement activities. The findings highlighted that family physicians' understanding of dementia and their ability to work with the dyad to become aware of and accept services, was an important component in the dyad's satisfaction. If caregivers received home support and the care recipients received emotional support from their social support network, they were more likely to be satisfied with their experiences with health care workers. In summary, increased awareness and provision of services were associated with more positive perceptions of network effectiveness. © 2007 Sage Publications.

Caregiving at the end of life:perspectives from spousal caregivers and care recipients.

OBJECTIVE: The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care. METHODS: A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience. RESULTS: Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care. SIGNIFICANCE OF RESULTS: Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.

Professional carers' knowledge and response to depression among their aged-care clients : the care recipients' perspective

Depression is an under-diagnosed disorder among the elderly, even in those who are in receipt of aged-care services. One factor associated with this under diagnosis has been identified as a reluctance amongst the elderly to discuss their mood and emotions with their medical practitioners. The current study focused on why depression is not recognised and acted on by those providing residential or home-based care to older people. We interviewed 15 elderly people residing in high-level or low-level aged-care facilities, and three elderly people who were receiving personal care in their homes. All participants had been identified by their care agencies as depressed. Participants reported their perceptions of their personal carers' knowledge and practices in managing the residents' depression. Although the participants described their carers in positive terms, they were critical of their knowledge and skills in recognising depression, and indicated that the communication between personal carers and care recipients about depressive symptomatology was seriously flawed. Training for personal carers in these areas, and efforts to change organisational culture are recommended.

Nutrition and physical activity policies and practices in family child care homes in oregon : baseline findings from the healthy home child care project

Baseline findings from the Healthy Home Child Care Project include data from Family Child Care Providers (FCCPs) in Oregon (n=53) who completed assessments of nutrition and physical activity policies and practices and BMI data for children in the care of FCCPs (n=205). Results show that a significant percentage of FCCPs failed to meet child care standards in several areas and that 26.8% of children under the care of FCCPs were overweight or obese. These data supported the development of an Extension-delivered intervention specific to FCCPs in Oregon and highlight areas of concern that should be addressed through targeted trainings of FCCPs.

Formal home health care, informal care, and family decision making

We use the 1993 wave of the Assets and Health Dynamics Among the Oldest Old (AHEAD) data set to estimate a game-theoretic model of families' decisions concerning the provision of informal and formal care for elderly individuals. The outcome is the Nash equilibrium where each family member jointly determines her consumption, transfers for formal care, and allocation of time to informal care, market work, and leisure. We use the estimates to decompose the effects of adult children's opportunity costs, quality of care, and caregiving burden on their propensities to provide informal care. We also simulate the effects of a broad range of policies of current interest. © (2009) by the Economics Department of the University of Pennsylvania and the Osaka University Institute of Social and Economic Research Association.

Young children returning home from care: The birth parents' perspective

While a wide range of literature exists on the experiences of children in foster care or adoption, much less is known about children who return home from care to their birth parents. This paper focuses on the perspectives of a small sample of birth parents of young children who returned home from care. It draws on findings from the Northern Ireland Care Pathways and Outcomes Study that has been following a population (n = 374) of children who were under 5 years and in care in Northern Ireland on the 31st of March 2000. As part of this study, interviews were conducted with the foster parents of 55 children, the adoptive parents of 51 children and the birth parents of nine children who had returned home from care. The paper explores the birth parents’ views on how they coped while their child was in care, how they were coping after the child had returned home and how their child was faring at home. Results revealed that these parents, and their children, were experiencing multiple difficulties and struggled to cope after the children had returned home.

At Home in Care: Children living with birth parents on a Care Order

This study explored the processes, background information, and perceived reasons why children and young people returned home while remaining in care, in the five HSC Trusts in Northern Ireland. The research also focused on understanding the functions the Care Order had for social services, the birth parents, and young people involved.
It was found that on 31st March 2009, there were 193 children/young people living with their birth parents on a Care Order in Northern Ireland. This is eight per cent of the total population of Looked After children, and is lower than had been anticipated from governmental statistics. In total, the case files of 47 of these young people (24% of them) were reviewed, and interviews were conducted with ten of them and their birth parent/s.
The analysis revealed that the majority of them had in common a parental background history of alcohol abuse and domestic violence, and most return breakdowns in the study were related to continuing parental alcohol and/or drugs misuse. While some children had a planned return home after parents had engaged in supports and completed assessments, many young people had returns that were not planned, as they initiated the move themselves, or previous foster placements had broken down and there were no alternative placements identified for them. Many of these young people essentially ‘voted with their feet’, and social services were required to ensure that they remained safe in often less than optimal circumstances.
After returning home, for many, Care Orders remained for initially unintended lengthy periods because of the risks posed by parents’ intermittent alcohol abuse and their lifestyle, contact issues, and parents’ desire to ensure that their children were able to access the supports that they needed. Thus, Care Orders at home tended to serve two main functions: to either monitor and/or support the placement.

Depression training program for caregivers of elderly care recipients : implementation and qualitative evaluation

The prevalence of untreated depression is high among older adults who receive care in residential facilities or in their own omes and is associated with reduced quality of life and other medical conditions, Research has suggested a number of rea-p sons for the low detection and treatment rates for this problem, including lack of knowledge and efficacy among those who provide direct care and poor communication between these caregivers and senior staff, and between senior staff and genera practitioners. In this study, we report on the implementation of a training program for care staff that aims to address these issues. Focus groups with participants who completed the training indicated a high level of satisfaction with the program and reported improvements in knowledge, self-efficacy, and communication within services. It is recommended that the program be more systematically evaluated in relation to its longer term effects on care provider practices and the well-being of depressed elderly care recipients.

The management of depressed elderly care recipients : family perspectives on the skills of professional carers

Recent studies have identified high levels of depression among older people, both those in their own homes and those in residential care. With the world's population ageing, it is timely for health service providers to consider how the escalating population of depressed elderly people will be managed. Although treating general practitioners may be the health professionals most expected to detect, treat, and monitor depression among the elderly, professional carers are well placed to assist in the detection and monitoring of the disorder. This study conducted individual interviews with 15 family members of depressed aged-care recipients to determine their perceptions of the skills and knowledge of depression of professional carers. Family members reported that carers are more likely to avoid than engage with their clients about depressive symptomatology and do not communicate their concerns with managers or general practitioners (GPs). Family members believed that, in general, professional carers were undertrained in these areas. The implications of these findings for health service planning and staff training are discussed.