The economic value of informal caregiving.
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This study explores the current market value of the care provided by unpaid family members and friends to ill and disabled adults. Using large, national data sets we estimate that the national economic value of informal caregiving was $196 billion in 1997. This figure dwarfs national spending for formal home health care ($32 billion) and nursing home care ($83 billion). Estimates for five states also are presented. This study broadens the issue of informal caregiving from the micro level, where individual caregivers attempt to cope with the stresses and responsibilities of caregiving, to the macro level of the health care system, which must find more effective ways to support family caregivers. (+info)
Alzheimer's disease in the United Kingdom: developing patient and carer support strategies to encourage care in the community.
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Alzheimer's disease is a growing challenge for care providers and purchasers. With the shift away from the provision of long term institutional care in most developed countries, there is a growing tendency for patients with Alzheimer's disease to be cared for at home. In the United Kingdom, this change of direction contrasts with the policies of the 1980s and 90s which focused more attention on controlling costs than on assessment of the needs of the patient and carer and patient management. In recent years, the resources available for management of Alzheimer's disease have focused on institutional care, coupled with drug treatment to control difficult behaviour as the disease progresses. For these reasons, the current system has led to crisis management rather than preventive support--that is, long term care for a few rather than assistance in the home before the crises occur and institutional care is needed. Despite recent innovations in the care of patients with Alzheimer's disease, the nature of the support that patients and carers receive is poorly defined and sometimes inadequate. As a result of the shift towards care in the community, the informal carer occupies an increasingly central role in the care of these patients and the issue of how the best quality of care may be defined and delivered is an issue which is now ripe for review. The objective of this paper is to redefine the type of support that patients and carers should receive so that the disease can be managed more effectively in the community. The needs of patients with Alzheimer's disease and their carers are many and this should be taken into account in defining the quality and structure of healthcare support. This paper shows how new initiatives, combined with recently available symptomatic drug treatment, can allow patients with Alzheimer's disease to be maintained at home for longer. This will have the dual impact of raising the quality of care for patients and improving the quality of life for their carers. Moreover, maintaining patients in a home environment will tend to limit public and private expenditure on institutional care due to a possible delay in the need for it. (+info)
Do social factors affect where patients die: an analysis of 10 years of cancer deaths in England.
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BACKGROUND: This study investigated whether indices of social deprivation were related to the proportion of cancer patients who died at home. METHODS: Data were derived from death registrations for all cancer deaths 1985-1994 in England. Two indices of deprivation (Underprivileged Area Score (UPA), or Jarman, and Townsend scores) were calculated for each electoral ward; 1991 Census data were used. The scores use combinations of variables, including the percentage in overcrowded homes, the percentage of elderly people living alone, the percentage of one-parent families, etc. A high score indicates more deprivation. The main outcome measures were the proportion (in five and ten year averages) of cancer deaths which occurred at home, calculated for every electoral ward (with populations usually ranging from 5000 to 11,000). Spearman rho was used to test for correlations between the proportion of cancer deaths at home and deprivation score. Electoral wards were categorized by deprivation score into three groups of equal size and analysed over 10 years. Multivariate analysis was used to determine the relative association of different patient based and electoral ward variables with cancer death at home. p < 0.05 (two-tailed) was taken as significant. RESULTS: There were over 1.3 million death registrations from cancer in the 10 years. The proportion who died at home was 0.27, in hospital 0.47, and other setting 0.26. There were wide variations (0.05-0.75) in the proportion of people who died at home in different electoral wards. Small inverse correlations were found between the percentage who died at home and the UPA (-0.35; p < 0.001) and Townsend (-0.26; p < 0.001) scores. The correlations were greatest in North Thames (-0.63, UPA) and smallest in West Midlands (-0.20, UPA). The proportion of home deaths for the different bands of deprivation were: 0.30 (low deprivation), 0.27 (middle deprivation) and 0.24 (high deprivation). Plotting the trends over 10 years suggests no change in this relationship. Multiple regression analysis predicted several ward and patient characteristics and accounted for 30 per cent of the variation. Increased age (patient variable), Jarman score and ethnic minorities (both ward variables) were associated with fewer patients dying at home. Being male and having cancer of the digestive organs were associated with home death. CONCLUSION: There are wide variations in the percentage of cancer deaths at home in different electoral wards. Social factors are inversely correlated with home cancer death, and may explain part of this variation. Home care in deprived areas may be especially difficult to achieve. (+info)
Children with cystic fibrosis benefit from massage therapy.
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OBJECTIVE: To measure the effects of parents giving massage therapy to their children with cystic fibrosis to reduce anxiety in parents and their children and to improve the children's mood and peak air flow readings. METHODS: Twenty children (5-12 years old) with cystic fibrosis and their parents were randomly assigned to a massage therapy or a reading control group. Parents in the treatment group were instructed and asked to conduct a 20-minute child massage every night at bedtime for one month. Parents in the reading control group were instructed to read for 20 minutes a night with their child for one month. On days 1 and 30, parents and children answered questions relating to present anxiety levels and children answered questions relating to mood, and their peak air flow was measured. RESULTS: Following the first and last massage session, children and parents reported reduced anxiety. Mood and peak air flow readings also improved for children in the massage therapy group. CONCLUSIONS: These findings suggest that parents may reduce anxiety levels by massaging their children with cystic fibrosis and their children may benefit from receiving massage by having less anxiety and improved mood, which in turn may facilitate breathing. (+info)
Experiences of hospital care and treatment seeking for pain from sickle cell disease: qualitative study.
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OBJECTIVE: To investigate how sociocultural factors influence management of pain from sickle cell disease by comparing the experiences of those who usually manage their pain at home with those who are more frequently admitted to hospital for management of their pain. DESIGN: Qualitative analysis of semistructured individual interviews and focus group discussions. PARTICIPANTS: 57 participants with genotype SS or S/beta-thal (44 subjects) or SC (9) (4 were unknown). 40 participants took part in focus groups, six took part in both focus groups and interviews, and nine were interviewed only. Participants were allocated to focus groups according to number of hospital admissions for painful crisis management during the previous year, ethnic origin, and sex. RESULTS: The relation between patients with sickle cell disease and hospital services is one of several major non-clinical dimensions shaping experiences of pain management and behaviour for seeking health care. Experiences of hospital care show a range of interrelated themes, which are common to most participants across variables of sex, ethnicity, and hospital attended: mistrust of patients with sickle cell disease; stigmatisation; excessive control (including both over- and undertreatment of pain); and neglect. Individuals respond to the challenge of negotiating care with various strategies. Patients with sickle cell disease who are frequently admitted to hospital may try to develop long term relationships with their carers, may become passive or aggressive in their interactions with health professionals, or may regularly attend different hospitals. Those individuals who usually manage their pain at home express a strong sense of self responsibility for their management of pain and advocate self education, assertiveness, and resistance as strategies towards hospital services. CONCLUSIONS: The current organisation and delivery of management of pain for sickle cell crisis discourage self reliance and encourage hospital dependence. Models of care should recognise the chronic nature of sickle cell disorders and prioritise patients' involvement in their care. (+info)
Where are the missing elders? The decline in nursing home use, 1985 and 1995.
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Findings from the 1995 National Nursing Home Survey suggest that elderly Americans are reducing their use of nursing home care. The numbers reflect a change in the role of the nursing home, as defined in this survey. By 1995 nursing facilities were increasingly focusing on patients with greater disability and postacute care needs. Preferred alternatives, most notably home-delivered care and assisted living, were likely filling the gap left by declining nursing home use. Better population-based studies are needed to track emerging trends and ascertain whether elders with disabilities are receiving the care they need. Such data could inform development of better public and private financing strategies for long-term care. (+info)
Home case management of malaria: an ethnographic study of lay people's classification of drugs in Suneka division, Kenya.
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Lay people in malaria-affected regions frequently have to choose from many over-the-counter malaria management drugs, requiring them to be able to identify these medications and distinguish between them. Lay people make these distinctions at two levels - age of the patient and the whether he or she has fever, pain or malaria. Sometimes decisions are based on incorrect information given by friends and relatives, causing prolonged suffering to the patient, exacerbating chloroquine resistance and leading to resistance to the sulfodoxine/pyrymethamine drugs now recommended as first-line treatment in Kenya. (+info)
Awareness of urban slum mothers regarding home management of diarrhoea and symptoms of pneumonia.
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A total of 635 mothers of under five children from urban slum area of Nanded city were assessed to know their awareness about home management of diarrhoea and symptoms of pneumonia. 48.5% of the mothers were unaware of any method of rehydrating the child with diarrhoea at home level followed by 36.2% mothers who were knowing home available fluids for rehydrating the child. 50.4% of the mothers were not knowing a single symptom of pneumonia followed by 35.1% mothers who were aware rapid abdominal movements (Pet Udna) as a symptom of pneumonia. (+info)