Community care for stroke patients in the last year of life: results of a national retrospective survey of surviving family, friends and officials

The quality of community care received in the last year of life by stroke patients and their informal carers is described. This is secondary analysis of data from the Regional Study of Care for the Dying, in which information was collected on a randomly selected sample of people who died in 1990, in 20 self-selected English health districts that were nationally representative in terms of socio-demographic characteristics and health care provision. The respondents comprised 20 spouses, 48 relatives, three friends or neighbours and 40 officials who had known about the last year of life of 111 people who died of stroke, and had spent some time at home (or in a residential or nursing home) in the last year of life. Two-fifths of those who died were reported to have needed more help with personal care (43%), a quarter to have needed more help with domestic chores (27%), and a third to have needed more financial help (31%). Three-fifths had spent some of their last year in a nursing or residential home (63%). Three quarters of respondents who had borne the brunt of caring reported that caring had restricted their own activities to a fair or severe extent (76%); only a third had found it a rewarding experience (32%). Spouses, and those caring for depressed or anxious stroke patients found caring particularly stressful. Stroke patients living in the community need more help with domestic chores and, in particular, with personal care. Informal carers require better support, especially spouses and for those caring for depressed or anxious stroke patients. Further research is required to identify and evaluate the most effective ways of meeting the needs of these patients and their families, and to explore the effects on their care of the Community Care legislation.     

Training physicians about caring for persons with disabilities: "Nothing about us without us!"

According to the World Report on Disability, physicians worldwide generally lack training about caring for persons with disabilities, thus frequently compromising their health care experiences and health outcomes. Many U.S. physicians are similarly untrained about critical aspects of providing care to persons with disabilities, perhaps contributing to disparities in their care. Recognizing these inadequacies, U.S. medical educators are beginning to develop core competencies for trainees relating to the care of patients with disabilities, including understanding patients' perceptions of their quality of life and skills in providing patient-centered care. Having today's physicians, even when genuinely well-intentioned, retain control over designing disability-related training programs for future doctors may miss critical issues in caring empathically and effectively for persons with disabilities. Involving persons with disabilities in identifying training needs and implementing curricula for future physicians may offer important opportunities for ensuring their competency to provide patient-centered care to persons with disabilities.     

Disability and dignity-enabling home environments

In Canada where long-term care is primarily oriented to elderly persons and affordable accessible housing is limited, younger disabled adults may be living in circumstances that do not meet their health needs and contribute to their social exclusion. The purpose of this study was to undertake an ethical analysis of what constitute an 'adequate' home environment for adults with significant mobility disabilities. An integrated design was used that combined qualitative interviews with normative ethical analysis in an iterative process. Twenty interviews with 19 participants were conducted in Ontario, Canada with two groups: younger adults (ages 18-55) with mobility disabilities and 'decision-makers' who consisted of policy makers, program administrators and discharge planners. Data were analyzed using a critical disability ethics approach and processes of reflective equilibrium. Drawing on Nora Jacobson's (Jacobson, 2009) taxonomy of dignity and pluralistic approaches to social justice, the concept of 'social dignity' provides a lens for exploring the adequacy of home environments for disabled people. Analyses suggested seven threshold conditions necessary for a dignity-enabling home: the ability to form and sustain meaningful relationships; access to community and civic life; access to control and flexibility of daily activities; access to opportunities for self-expression and identity affirmation; access to respectful relationships with attendants; access to opportunities to participate in school, work or leisure; access to physical, psychological and ontological security. The results have implications for housing, health and social care policies, and political reform. Social dignity provides a normative ethical grounding for assessing the adequacy of home environments. The threshold elements outline specific dignity-enabling conditions that are open to further specification or elaboration in different contexts.     

Informal care for illness in rural southwest Uganda: the central role that women play

In rural Uganda care for those who are ill tends to be home based because of inadequate and expensive health care facilities, lack of medication and poor staffing levels in health units. Research findings suggest that women are responsible for the bulk of caring activities. This paper questions the assumption that female informal carers are in a position to cope with illness episodes in the home. Data were collected from 54 female informants in a rural population in southwest Uganda. Supplementary data from in-depth interviews with survey participants and counsellors were also collected. Findings suggest that women are the main providers of informal care within the home. Many women, particularly in female-headed households, did not own or have direct access to the necessary finances to meet the family's health care needs as expected of them. Although relatives and friends were seen as a valuable resource, because of poor household proximity and financial constraints they were not always in a position to offer or provide assistance. The women also identified themselves as responsible for a variety of home and agricultural tasks; such activities were frequently disrupted by illness episodes. As women take on the additional burden of care for those with HIV/AIDS an inevitable conclusion is that their resources, both social and economic, will not be adequate. These data indicate the need for additional research and stress the importance of appropriate support and relief programs for those responsible for informal care.     

Betreute Wohnformen für chronisch schizophren Erkrankte

This contribution presents data from a study of mental health services assessing developments in five groups of patients with chronic schizophrenic disorders. The patients live in different types of residential care recently established in a region of eastern Germany. To illustrate patients currently to be deinstitutionalized the first part focuses on sociodemographic and psychopathological features, social disabilities, and normative needs for psychiatric care of those still in the nursing home area of a large psychiatric hospital. These data are compared to those from a patient group already dehospitalized in social therapeutic hostels, which leads to some conclusions for the health policies regarding further deinstitutionalization. It appears that this process should be interrupted to improve the concepts of future social therapeutic hostels and meet the needs for caring for patients still awaiting dehospitalization. In the second part, data on psychopathology, social disabilities, and normative needs for the psychiatric care of cohorts living autonomously in their own apartments demonstrate that the principle of needs-oriented care is also not achieved systematically concerning sheltered community residential care. Currently the allocation of this type of residential care is not based directly at the level of individual psychopathological symptoms and social inabilities. These findings underscore the demand for standardized individual assessments of needs for care and for a dynamic and needs-oriented approach to community care.     

Time away from “smelling the roses”: Where do mothers raising children with disabilities find the time to work?

Using the Australian Time Use survey (TUS), this study examined time allocation among working parents raising children with disabilities. Findings showed that raising children with disabilities reduced the time working mothers had for leisure activities, but increased the time for socializing activities. Consistent with the literature, the latter effect probably reflects the special need of working mothers raising children with disabilities for strong social networks offering regular support. While a mother's time for personal care was reduced by a child with a disability, a father's time for personal care was unaffected. Thus, mothers were relatively more disadvantaged than fathers in terms of total time for themselves. This study offers new knowledge on the impact of childhood disability on working parents' time for personal care and leisure, activities that can improve their psychological and physical well-being.     

The Continuation of Home Care to Severely Impaired Children and Aged in Israel:

There are a growing number of children and aged with severe chronic health problems in the community. Mothers become the prime caregivers to these children and aging spouses or middle-aged offspring the caregivers to these aged. The services offered to these families are determined by economic and social conditions, as well as changing fashions, rather than knowledge of the patients' and caregivers' needs. The purpose of this study was to assess the impact of homecare upon families caring for children versus those caring for aged and these families' attitudes toward continuation of home care versus institutionalization. The families included in the study were drawn randomly from the case load of community nurses in central Israel. In-depth interviews were conducted with 92 families of severely impaired children and 181 families of severely impaired adults and aged in their homes. While the majority of both populations carry a heavy burden of caregiving over years. they also receive gratification from their ability to care for their patient at home. There is little difference between those caring for children and those caring for adults in their attitudes toward continuation of home care. Mental rather than physical impairment, a deteriorating illness trajectory; depression, aggression and tension of the care-giver, the absence of sufficient social support and home care services correspond with negative feelings toward continued home care. The perceived impact of caregiving responsibilities upon the caregivers' lives, the ability to tolerate and manage symptoms and above all the quality of the patient-caregiver relationship influenced the caregivers' attitudes toward institutionalization in both populations. Family attitude toward continued homecare and institutionalization of children and adults are compared and the needs for services discussed.     

The continuation of home care to severely impaired children and aged in Israel: family attitudes.

There are a growing number of children and aged with severe chronic health problems in the community. Mothers become the prime caregivers to these children and aging spouses or middle-aged offspring the caregivers to these aged. The services offered to these families are determined by economic and social conditions, as well as changing fashions, rather than knowledge of the patients' and caregivers' needs. The purpose of this study was to assess the impact of homecare upon families caring for children versus those caring for aged and these families' attitudes toward continuation of home care versus institutionalization. The families included in the study were drawn randomly from the case load of community nurses in central Israel. In-depth interviews were conducted with 92 families of severely impaired children and 181 families of severely impaired adults and aged in their homes. While the majority of both populations carry a heavy burden of caregiving over years, they also receive gratification from their ability to care for their patient at home. There is little difference between those caring for children and those caring for adults in their attitudes toward continuation of home care. Mental rather than physical impairment, a deteriorating illness trajectory; depression, aggression and tension of the caregiver, the absence of sufficient social support and home care services correspond with negative feelings toward continued home care. The perceived impact of caregiving responsibilities upon the caregivers' lives, the ability to tolerate and manage symptoms and above all the quality of the patient-caregiver relationship influenced the caregivers' attitudes toward institutionalization in both populations. Family attitude toward continued homecare and institutionalization of children and adults are compared and the needs for services discussed.     

Disabled and handicapped in the Aquitaine region

An extension of the national survey on health and medical consumption conducted in 1981 on a random sample of the population living at home in Aquitaine used questionnaire on presence of disability and handicap (according to WHO definition). Occupations, mobility, personal care, communication restriction are observed in respectively 10.6, 3.3 and 1.5% of the sample. Because people aged 60 and over are concerned in 60 to more than 80% according disability or handicap dimension, analysis of those was follow up for this only population. Personal and domestic care disabilities are then noted for one out of eight persons, communication disabilities are present among one subject out of twenty. One person out of seven is restricted for mobility and physical independence whereas one out of four was restricted for customary occupations and one out of ten for social relationships. Those aged 75 and over are three of four times more often involved than those aged 60 to 74 with the exception of usual occupations. The 5% of those defined as dependent and nevertheless living alone are the ones that are likely to be institutionalized because of a minor intercurrent health problem.     

The power to choose: supports for families caring for individuals with developmental disabilities

In an exploratory study of family support services in Massachusetts, three focus groups were convened to obtain the perspectives of parents caring for individuals with developmental disabilities and living at home. This article summarizes key themes that emerged from the group discussions: effects of family supports on family life, flexibility of supports, barriers, unmet needs, and recommendations for change. Social workers and health care professionals can enhance the well-being of people with developmental disabilities and their families by addressing the needs of the entire family, facilitating family choice and control of supports, and helping families navigate the complex service system.     

The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’

BackgroundIncreasing numbers of children with complex health‐care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home.MethodsWe conducted a thematic analysis of eleven in‐depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life.ResultsWe identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life‐threatening), co‐ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep‐deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal.DiscussionThe burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health‐care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others.     

A critical examination of home care: end of life care as an illustrative case

Drawing on end of life care as an illustrative case, this paper critically examines the provision of care in the home, identifying a number of inherent tensions. For 60 years the hospital has been the preferred site of care. However, the UK caring division of labour is currently undergoing a process of (re)domestication and the provision of home care is increasingly regarded as a 'gold standard' for the organisation of care, in institutional and domestic contexts. In this paper we argue that while 'home care' policies serve a range of professional and political agendas, they contain unacknowledged contradictions and strains, creating challenges for both family and professional carers. The realities of home care are examined through reconceptualising qualitative data generated from three research projects concerned with dying in the community. We argue that, whilst previous work has highlighted the burdens the redomestication of care places upon carers, home care philosophies and policies have led to over-romanticised notions of care which privilege the value of caring relationships without acknowledging the dynamic interaction of such social relationships with the actual work of caring. Moreover, such policy trends have created a nexus of social expectations and obligations for which modern society is unprepared. With reference to both end of life care, and home care more widely, we argue that health care planners and professionals need to think more critically about the way care is delivered. Home is not merely about a physical space, but the social and emotional relationships therein. Good 'home care,' characterised by attention to patient-centred needs and flexible in design and scope, does not have to be located within the private sphere; relationships may actually be maintained and nurtured by enabling people to have a realistic choice of care in an institution.     

"We're tired, not sad": benefits and burdens of mothering a child with a disability

Caregiver burden has received considerable emphasis in the literature on the social experience of mothering children with disabilities. Little attention has been paid, however, to either the nature of the burdens perceived or to maternal ability to see beyond the burdens to the benefits of their caregiving role. This study utilizes a mixed methods approach to examine these neglected aspects of the social experience of mothering children with disabilities. Findings of a survey of 81 mothers of children with disabilities in Florida, USA and follow-up interviews with 7 of these mothers indicate that: 1. For most of the mothers included in the study, "the burden of care" is a matter of socio-structural constraints (Objective Burden) rather than emotional distress (Subjective Burden); 2. Despite the socio-structural constraints associated with caring for a child with complex needs, most mothers perceive valuable benefits in having a child with a disability; and 3. Perceived Stigma has an important positive impact on both dimensions of burden and, through its impact on Subjective Burden, can decrease the perceived benefits of caring for a child with a disability.     

Home‐care programmes for older adults with disabilities in Canada: How can we assess the adequacy of services provided compared with the needs of users?

The need for home care will probably continue to increase over the next decade as one response to innovative health practices designed to help people receive services at home instead of in institutions. However, there are no data for determining whether home-care programmes can meet user needs. The objectives of the present study were to describe the functional autonomy profile of the users of public home-care programmes in Québec, Canada, and to compare the level of adequacy between required and provided services in public home-care programmes for older adults with disabilities. This study was based on a cross-sectional design from September to December 2002. The population studied consisted of all users of public home-care services in one administrative region in the province of Québec over this 3-month period. Each user was assessed with the Functional Autonomy Measurement System (SMAF) and then classified into one of the 14 Iso-SMAF profiles. The total number of hours of care required was determined using the median number of hours of nursing care, personal care and support services associated with each profile. For the sake of comparison with the services required, the services provided were calculated from an administrative databank that included statistics of the time spent by health professionals on caring for home-care users. The ratio of hours of services provided to the number of hours of services required by home-care users highlights a discrepancy between the services provided and user needs. The results of this study show the feasibility of describing users of public home-care programmes and the adequacy of services provided in relation to user needs. Based on these results, public home-care programmes in the province of Québec appear to be under-funded.     

Home is where the heart is. Ministering to homebound patients opens new doors for pastoral care givers

Today many patients must convalesce or die at home. Thus home healthcare is a growing service. Many home health agencies are finding that caring for patients' spiritual needs can be just as important to their well-being as caring for their physical needs. Four years ago Humboldt Home Health Services (HHHS), Eureka, CA, launched a pastoral care program in response to a growing patient need. HHHS now offers pastoral care free to all its patients. Each certified pastoral care counselor on the staff visits three to five patients each day. They encourage patients to tell their stories, describe adjustments they have had to make to their illnesses, and explore how they are coping emotionally and spiritually with their situations.     

Coming Together Through Touch: The Experiences of Parents of Children With Disabilities Learning the Principles of Massage

This paper describes pilot testing of an intervention designed to provide parents of children with disabilities with the basic skills of touch therapy. The aims were 1) to gain a greater understanding of parents’ experience of caring for a child before attending the intervention and 2) to determine whether the intervention was acceptable and perceived to be of value by parents. The sample comprised sixteen parents (three couples, 9 mothers, 1 grandmother) and 13 children. The intervention comprised 8 weekly 1 ‐hour sessions, during which one therapist provided instruction in touch therapy to one parent‐child dyad. Data were collected through interviews with parents before the intervention and at 4 months. Results of pretest interviews revealed that parents’ experiences of caring for children with disabilities reflected that described in the literature (e.g., wide ranging impact on family, career and leisure activities). Furthermore, parents felt they suffered from insufficient information and support in attempts to manage their child's condition at home. Results of the post‐test interviews suggest that both parents and children found the experience of touch therapy enjoyable. Parents reported benefiting in terms of having something positive to offer, feeling more confident in their own abilities and feeling closer to their child. Children were reported to have improved sleep patterns, more relaxed muscles and improved bowel functioning. In conclusion, findings suggest that increasing parental resources in relation to their contribution to their child's care might be achieved through training in simple touch therapy techniques that can be used in the home environment.     

Gender differences in informal caring

Men have hitherto largely been invisible in research on informal care. This paper examines gender differences in informal caring, focusing on gender differences according to the relationship between the carer and care-recipient and the location of caring. The paper uses secondary analysis of the 1990–91 General Household Survey, which identified over 2700 adults as informal carers. Four per cent of men and women provide care for someone living in the same household. More women than men, 13% compared with 10%, provide care for someone living in another household. Men carers are less involved in care provision than women, providing fewer hours of care each week, and are less likely to be the main carer. However, gender differences are most marked among married carers, apart from those caring for their spouse, and least among unmarried carers. Married men can often rely on their wives to perform caring roles rather than performing them personally. Women carers are more likely to provide personal care than men carers, but the gender difference is least among those caring for their spouse or for disabled children. Cross-sex personal care is performed within the marital relationship and by parents caring for disabled children, but seldom by adult children caring for their parents or in more distant caring relationships. Evidence of cross-sex taboos in giving personal care is largely restricted to care provided in another household. Since the majority of elderly people in need of care are women, such cultural taboos may reinforce the pressure on mid-life women to care for mothers and mothers-in-law.     

居家老年髋部骨折照护者专业化照护需求及影响因素分析

目的探讨居家老年髋部骨折照护者专业化照护需求及影响因素。方法采用方便抽样法,抽取解放军总医院出院6个月内的63例老年髋部骨折患者及其照护者为调查对象。应用自制一般资料调查表、居家照护者需求量表展开调查。结果居家老年髋部骨折照护者专业化照护需求总分为(14.54±1.84)分,后续医疗服务维度总分为(3.65±0.83)分,照护相关医疗信息维度总分为(6.71±0.92)分,社会服务维度总分为(3.00±1.00)分,心理支持服务维度总分为(1.22±0.63)分。多元逐步回归分析结果显示,患者自理能力(B=0.854)、合并内科疾病情况(B=0.510)、居家照护者个人月收入(B=-0.609)、与患者同住情况(B=1.003)是居家照护者专业化照护需求的主要影响因素(P <0.05)。结论居家老年髋部骨折照护者专业化照护需求是多方面的,建议医护人员从照护者对疾病相关知识、康复指导、社会支持、心理支持需求等角度,给予专业支持,减少其照护压力,提高患者的照护质量。