Effect of a training programme to reduce stress in carers of patients with dementia.

OBJECTIVE--To reduce the psychological stress and improve the skills in coping of people who care for relatives with dementia. DESIGN--Assessment and suitability of carers by questionnaire; assessment of patients and carers in a hospital outpatient clinic; allocation to groups according to date of application to study. Linkage of groups of four carers and programme coordinator by telephone conference calls over 12 months after programmes. Reassessment at three, six, 12, and, for those in the "wait list" group, 18 months. SETTING--The programmes were conducted in the psychiatry unit of a Sydney teaching hospital. SUBJECTS--Eligible patients were less than 80 years old, had mild to moderate dementia, and lived at home with their carer. Of the 96 patient-carer pairs in the study, 33 were in the dementia carers'' programme group, 31 were in the memory retraining group, and 32 were in the wait list group. INTERVENTIONS--Carers in the dementia carers'' programme received training in coping with the difficulties of looking after patients with dementia while the patients had sessions in subjects such as memory retraining. In the memory retraining programme patients were admitted and received the patient component of the carers'' programme while their carers had 10 days'' respite. In the wait list group carers waited six months before undertaking the carers'' programme. MAIN OUTCOME MEASURES--Effect of the programmes on carers'' general health questionnaire scores and the rate of placement of patients in institutions. RESULTS--At 12 months'' follow up the carers'' programme had resulted in significantly lower psychological stress among carers than the memory retraining programme (mean (SD) general health questionnaire scores at 0 months were 6.31 (6.23) and 3.60 (6.25) respectively, and at 12 months were 4.69 (5.58) and 7.40 (9.39); p less than 0.05.) In the wait list group distress scores remained stable, even after the carers and patients had undertaken the carers'' programme. Patients deteriorated over 12 months regardless of group allocation, but at 30 months, allowing for patients who died and could not be included in the analysis, 65% of patients in the carers'' programme group were still living at home compared with 26% in the memory retraining programme group. CONCLUSION--The intensive intervention programme described for carers of patients with dementia can reduce the psychological morbidity of the carer and delay the placement of the patient in an institution without increasing the use of health services by either patient or carer.     

Death from cancer at home: the carers' perspective.

OBJECTIVES--To collect information from principal carers of people who had died at home with cancer; to identify areas of support which need improvement. DESIGN--Semistructured interviews with carers two to four months after the death. SETTING--38 general practices in the Exeter, Torbay, and Plymouth health districts. SUBJECTS--207 carers. MAIN OUTCOME MEASURES--Services received by carers and quality of support. RESULTS--161 of 207 patients were aged 60 or over. 88 carers were aged under 60, 110 were 60-80, and 9 were > 80. Carers had difficulty in getting urgent professional help in only 15 out of 177 cases. 124 carers were not given advice on financial help and 174 were not told of support available from local charities. Although pain was well controlled, 25% of patients had no relief of other symptoms. Overall, 150 carers considered the support excellent, 45 good, 8 moderate, 2 poor, and 2 had no comment. CONCLUSIONS--Although care has improved in recent years, health professionals need to give carers more advice about help available outside health services. Domestic help was often needed earlier. Better appreciation of carers'' problems is needed.     

TELECARE,REMOTE MONITORING AND CARE

Telecare is often regarded as a win/win solution to the growing problem of meeting the care needs of an ageing population. In this paper we call attention to some of the ways in which telecare is not a win/win solution but rather aggravates many of the long‐standing ethical tensions that surround the care of the elderly. It may reduce the call on carers' time and energy by automating some aspects of care, particularly daily monitoring. This can release carers for other caring activities. On the other hand, remote and impersonal monitoring seems to fall short of providing care. Monitoring may be used to help elderly users retain independence. But it may also increase the amount of information which flows from users to carers, which can result in a form of function‐creep that actually undermines independence.     

Developing Item Banks for Measuring Pediatric Generic Health-Related Quality of Life: An Application of the International Classification of Functioning,Disability and Health for Children and Youth and Item Response Theory

The purpose of this study was to develop item banks by linking items from three pediatric health-related quality of life (HRQoL) instruments using a mixed methodology. Secondary data were collected from 469 parents of children aged 8-16 years. The International Classification of Functioning, Disability and Health-Children and Youth (ICF-CY) served as a framework to compare the concepts of items from three HRQoL instruments. The structural validity of the individual domains was examined using confirmatory factor analyses. Samejima''s Graded Response Model was used to calibrate items from different instruments. The known-groups validity of each domain was examined using the status of children with special health care needs (CSHCN). Concepts represented by the items in the three instruments were linked to 24 different second-level categories of the ICF-CY. Eight item banks representing eight unidimensional domains were created based on the linkage of the concepts measured by the items of the three instruments to the ICF-CY. The HRQoL results of CSHCN in seven out of eight domains (except personality) were significantly lower compared with children without special health care needs (p<0.05). This study demonstrates a useful approach to compare the item concepts from the three instruments and to generate item banks for a pediatric population.     

Evaluation of a stroke family care worker: results of a randomised controlled trial.

OBJECTIVE: To examine the effect of contact with a stroke family care worker on the physical, social, and psychological status of stroke patients and their carers. DESIGN: Randomised controlled trial with broad entry criteria and blinded outcome assessment six months after randomisation. SETTING: A well organised stroke service in an Edinburgh teaching hospital. SUBJECTS: 417 patients with an acute stroke in the previous 30 days randomly allocated to be contacted by a stroke family care worker (210) or to receive standard care (207). The patients represented 67% of all stroke patients assessed at the hospital during the study period. MAIN OUTCOME MEASURES: Patient completed Barthel index, Frenchay activities index, general health questionnaire, hospital anxiety and depression scale, social adjustment scale, mental adjustment to stroke scale, and patient satisfaction questionnaire; carer completed Frenchay activities index, general health questionnaire, hospital anxiety and depression scale, social adjustment scale, caregiving bassles scale, and carer satisfaction questionnaire. RESULTS: The groups were balanced for all important baseline variables. There were no significant differences in physical outcomes in patients or carers, though patients in the treatment group were possibly more helpless less well adjusted socially, and more depressed, whereas carers in the treatment group were possibly less hassled and anxious. However, both patients and carers in the group contacted by the stroke family care worker expressed significantly greater satisfaction with certain aspects of their care, in particular those related to communication and support. CONCLUSIONS: The introduction of a stroke family care worker improved patients'' and their carers'' satisfaction with services and may have had some effect on psychological and social outcomes but did not improve measures of patients'' physical wellbeing.     

Predictive medicine,genetics and schizophrenia

One of the developments frequently foreseen as an outcome of the human genome project is 'predictive medicine'. This is usually taken to mean identification of individuals with genetic risk factors for disease, followed by preventive measures. The paper examines the complications that may arise in efforts to realize this vision in relation to a particular condition often mentioned as a target for the new genetics: schizophrenia. This examination is informed by interviews with six groups with different interests in and experiences of schizophrenia: geneticists, psychiatrists, community psychiatric nurses, general practitioners, carers and schizophrenic patients. It is concluded that predicting who may be at increased risk of schizophrenia will be, at best, a mixed blessing for more of those involved. Questions of quilt, stigma and labelling will be particularly troubling if genes of major effect in the aetiology of schizophrenia are identified.     

Formal and informal support received by carers of elderly dependents.

This study describes the activity of informal carers who look after elderly dependents and particularly investigates the role of formal services in supporting these carers in maintaining dependent, elderly people in the community. The results lend no support to the view that families neglect their elderly relatives or that community services displace the role of informal carers, but rather suggest that carers support elderly dependents at great cost to themselves and with inadequate support from community services.     

Needs for care from a demand led community psychiatric service: a study of patients with major mental illness.

OBJECTIVE--To measure needs for care of patients aged 18-65 years with major mental illness. DESIGN. Identification of everyone in one area seen by a health professional within the previous five years because of a psychotic disorder. Interview of a one in three sample of patients and their main carers with the cardinal needs schedule. SETTING--Hamilton, a socially deprived district of Scotland. SUBJECTS--71 subjects were interviewed from the original sample of 263 patients. MAIN OUTCOME MEASURES--"Cardinal problems" in seven clinical and eight social areas of functioning; these are defined as problems requiring action. "Needs"-cardinal problems for which suitable interventions exist but have not been tried recently. RESULTS--High levels of morbidity were found. 30 interviewed patients (42%; 95% confidence interval 31% to 54%) had one or more clinical needs. 35 (49%; 38% to 61%) had one or more social needs. Skills to deal with all but seven needs in the sample were available at the time of investigation. Patients not being seen by the community mental health team were similar in severity and levels of need to those who were on the community team''s caseload. Care was unequivocally and severely inadequate for four patients. Shortcomings in service delivery usually arose from failure to monitor some patients at home. Problems were not due to shortage of acute psychiatric beds nor the absence of an elaborate assertive community care team. CONCLUSIONS--Systematic assessment of needs with research instruments can give valuable insights into the successes and failures of community care of people with major mental illness. Most needs could be dealt with in these patients but in our area (and probably most other parts of the United Kingdom) this would entail diversion of resources from people with less severe disorders.     

Psychometric Evaluation of the HIV Stigma Scale in a Swedish Context

Background

HIV-related stigma has negative consequences for infected people''s lives and is a barrier to HIV prevention. Therefore valid and reliable instruments to measure stigma are needed to enable mapping of HIV stigma. This study aimed to evaluate the psychometric properties of the HIV stigma scale in a Swedish context with regard to construct validity, data quality, and reliability.

Methods

The HIV stigma scale, developed by Berger, Ferrans, and Lashley (2001), was distributed to a cross-sectional sample of people living with HIV in Sweden (n = 194). The psychometric evaluation included exploratory factor analysis together with an analysis of the distribution of scores, convergent validity by correlations between the HIV stigma scale and measures of emotional well-being, and an analysis of missing items and floor and ceiling effects. Reliability was assessed using Cronbach''s α.

Results

The exploratory factor analysis suggested a four-factor solution, similar to the original scale, with the dimensions personalised stigma, disclosure concerns, negative self-image, and concerns with public attitudes. One item had unacceptably low loadings and was excluded. Correlations between stigma dimensions and emotional well-being were all in the expected direction and ranged between −0.494 and −0.210. The instrument generated data of acceptable quality except for participants who had not disclosed their HIV status to anybody. In line with the original scale, all subscales demonstrated acceptable internal consistency with Cronbach''s α 0.87–0.96.

Conclusion

A 39-item version of the HIV stigma scale used in a Swedish context showed satisfactory construct validity and reliability. Response alternatives are suggested to be slightly revised for items assuming the disclosure of diagnosis to another person. We recommend that people that have not disclosed should skip all questions belonging to the dimension personalised stigma. Our analysis confirmed construct validity of the instrument even without this dimension.     

A women's health shop: a unique experiment.

A women''s health shop in Edinburgh was open for 16 months to provide information and advice in a non-clinical setting and to allow an interchange between informal and formal care in the community. Staffed by nurses, it was visited by 5664 women and 400 men, an average of 24 people each working day. The most popular topics for discussion were women''s health problems, and 17% of women had a personal discussion with the nurse. The shop provided a useful and popular service and offered a practical method of furthering the concept of health promotion.     

Behind the screens: care staff observations on delivery of oral health care in nursing homes

Objective: To identify qualitatively carer staff attitudes, practices and clinical comments related to oral health care of functionally dependent nursing home clients. Design: Open-ended questions included in a longer quantitative questionnaire. Setting: 22 randomly selected nursing homes in the Bristol area. Subjects: 416 carers employed in these homes. Results: The majority of carers thought that clients had a right to good oral health, accepted the carers' role in helping clients with oral and denture hygiene, but recognised that oral health care provision was deficient. However, some carers believed oral health care to be solely the clients' responsibility despite high disability levels. Main barriers to providing oral health care were low prioritisation of oral health by nursing management, lack of co-operation from cognitively impaired clients, and lack of training. Carers were critical of homes' lack of arrangements for routine professional dental cheeks, lack of commitment to staff training, low standards of oral health care by colleagues, and lack of provision of oral hygiene aids and cleansing materials for clients. Many responses indicated ways in which nursing home oral health care could be improved. Carers reported contrasting experiences of dental treatment, and deplored recent decreased availability of subsidised dental care. Conclusions: Carers' generally positive attitudes towards clients' oral health care should encourage health educators. Insights gained from qualitative data can help to identify the less obvious causes for poor oral care delivery, which can then be addressed in education and training initiatives in nursing home settings.     

Onderwijs in het Nationaal Programma Ouderenzorg

The Netherlands Organisation of Health Research and Development started in 2008 the Dutch National Care for the Elderly Programme (in Dutch abbreviated as NPO) with the aim to improve the quality of life for the frail older people through better quality of care (health, social, community) which is tailored to the needs and wants of older people. The delivery of good care is related with competent professional behaviour which is inextricably linked to the education of professionals. This article presents an overview of 32 educational programmes developed within the NPO. Within the NPO different educational programmes were developed on relevant themes to improve elderly care. However, the programmes focused mainly on professionals in health care, especially those working in primary care. For nurses and nursing assistants and more or less for physicians also different educational programmes were developed. Educational programmes for paramedics or professionals working in social care, housing or in the municipalities were scarce. This is also the case for specific themes in elderly care like loneliness or (domestic) violence. Moreover, none of the experiments focused on older people or informal care givers. Although 22 of the 32 projects developed educational programmes for different groups, multi – or interdisciplinary education is rare in these programmes. Based on the overview we advise the development of more educational programmes on: target groups which were less or not addressed in the NPO, like professionals in social care and paramedics; multi- or interdisciplinary collaboration; and themes, like loneliness in older people and elder abuse.     

Veranderingen in de kwaliteit van leven van thuiswonende ouderen: speelt de vorm van zorg een rol?

Changes in the quality of life of older people living at home: does type of care play a role? Purpose: To determine whether a change in physical, psychological and social dimensions of quality of life of older people living at home is associated with receiving formal care, compared to informal care and no care. Method: Data from the observation cycles in 1998 and 2001 of the Longitudinal Aging Study Amsterdam (LASA) were used. Older people receiving formal homecare in 1998 were compared to older people receiving informal care and to older people receiving no care at all in 1998 on subjective scores on 3-year changes in self-perceived health, loneliness, positive affect and satisfaction with life. The data were analysed using linear regression analysis and ANOVA. Results: In all groups there is a change for the worse between 1998 and 2001 in the four aspects of quality of life. Self-perceived health declines significantly more in the group receiving formal care compared to the group without care, but this is explained by a higher score on functional limitations in 1998. Loneliness increases significantly more in the group receiving formal care, even after correction for confounders. In the group receiving formal care the satisfaction with life decreases significantly more compared to the group receiving no care and the group with informal care. An interaction effect with gender was found, showing that after correction for confounders this difference is maintained for the women but not for the men. There is no significant difference between the three care groups regarding changes in positive affect. Conclusion: Older men and women who receive formal home care experience an increase in loneliness, and older women who receive formal care experience less satisfaction with life, compared to women who receive informal care or no care. Future research should confirm these results and investigate the mechanisms underlying these changes. Tijdschr Gerontol Geriatr 2011; 42: 170-183     

Symposium De toekomst van de informele zorg

Due to the reform of long term care in 2015, there is growing concern about whether groups at risk receive the care they need. People in need of care have to rely more on help from their social network. The increased need for informal care requires resilience and organizational skills of families, but also of volunteers, professionals and employers. What does this mean for the provision of informal care in the next decennia? The symposium ‘The future of informal care’, organized on January 26 2017 by the National Institute for Social Research and the Institute for Societal Resilience of the Vrije Universiteit, addressed possible answers to this question. In her inaugural speech Alice de Boer discussed social inequality as possible determinant and outcome of informal care. Some conclusions:Until 2050 the absolute number of 75-plus doubled to about 3 million persons, but the number of informal caregivers will decrease. In addition to the importance of social and economic resources (the ‘have & have-nots’), the ability to arrange care (the ‘can & can-nots’) gains importance.Almost half of the older employers provides informal care just before retirement. Flexibility in working hours and work location facilitates combining work and care, but about half of the employers indicates that partial retirement and working at home are no options.Informal caregivers and professionals often provide care from comparable perspectives and identities. Addressing similarities rather than differences improves their chances for collaboration.The number of adult children providing household care to older parents increased between 2002 and 2014. This suggests an increase in family solidarity, but current reform policies may increase the gender inequality in caregiving families.Spouses and children remain primary caregivers in the future, preferably supported by many different types of caregivers. Not everybody has the capabilities to organize and direct such a large care network.Providing informal care increases the risk for overburden and absence at work or education. Informal caregivers at risk remain, also in the future, women, spouses, migrants, and younger carers.     

Health Care Professionals' Views on Discussing Sexual Wellbeing with Patients Who Have Had a Stroke: A Qualitative Study

Objectives

To examine the experiences of health care professionals discussing sexual wellbeing with patients who have had a stroke.

Design

In-depth qualitative interview study with purposive sampling and thematic analysis.

Participants

30 health care professionals purposively recruited to include different roles and settings along the stroke patient pathway in secondary and primary care.

Setting

Two hospitals and three general practices in the West Midlands, UK.

Results

Sexual wellbeing was a topic that participants did not raise with patients and was infrequently raised by patients. Barriers to raising discussion were on four levels: structural, health care professional, patient, and professional-patient interface. Barriers within these levels included: sexual wellbeing not present within hospital stroke policy; the perception that sexual wellbeing was not within participants'' role; participants'' concern that raising the issue could cause harm to the patient; and the views that discussion would be inappropriate with older people or unimportant to women. Resources exist to aid discussion but many participants were unaware of them, and most of those that were, did not use them routinely.

Conclusions

Participants lacked motivation, ownership, and the confidence and skills to raise sexual wellbeing routinely after stroke. Similar findings have been reported in cancer care and other taboo subjects such as incontinence potentially resulting in a sub-optimal experience for patients. Normalisation of the inclusion of sensitive topics in discussions post-stroke does not seem to need significant structural intervention and simple changes such as information provision and legitimisation through consideration of the issue in standard care policies may be all that is required. The experiences recounted by professionals in this study suggest that such changes are needed now.     

Ervaren belasting door mantelzorg; constructie van de EDIZ-plus

To measure the experienced burden by informal carers (N = 2.444), a 15-item Mokken scale has been developed. This concerns an extended version of the EDIZ ("Ervaren druk door Informele zorg"); several items refer to the pressure of time brought by the combination of labour and care and the consequences for the health of the informal carers are added to the EDIZ. We call this new scale the EDIZ-plus; it concerns a reliable one-dimensional and hierarchical scale which extends from o (no burden) to maximum 15 (severe burden). First, the burden manifests itself in feelings of responsibility of the carer, followed by having difficulty with combining work and family tasks and ultimately exceeding all limits due to too many obligations. In most cases this last group does not only deal with conflicts at home or at work and a decline in their own health, they also experience all other problems in the scale. The presumed limit for overburdening is enclosed by the proposition 'caring put too much pressure on me'. This is a score on the EDIZ-plus of nine or higher. Furthermore, the scale has proved to be usable for several population groups, such as carers of partners and children, parents/parents-in-law and carers of different patient populations (people with dementia, mental disability or a chronic disease). The EDIZ-plus is not only suitable because of its reasonable psychometric qualities, but also because of the usability in different populations.     

What would constitute success for UK biotechnology in 2005?

This paper presents the rationale and results of a scenario exercise concerning possible future developments in UK biotechnology. The final output of this exercise is a 'consensus' vision of what success might look like for the UK in biotechnology in 2005. The 'success scenario' was developed during a two-day workshop through structured discussions in a group of people active in biotechnology in industry, research agencies, consultancies or academe.     

Evidence of unmet need in the care of severely physically disabled adults.

OBJECTIVE--To identify unmet needs in the care of severely disabled people aged 16-64. DESIGN--Detailed personal interview and physical assessment of physically disabled adults; personal or telephone interview with carers. SETTING--Somerset Health District. SUBJECTS--181 severely disabled adults and their carers. MAIN OUTCOME MEASURES--Independence in activities of daily living; identity of requirements for assessing communication disorders; appropriate provision of services and allowances. RESULTS--53 (29.3%) of the 181 disabled subjects had unmet needs for aids to allow independence in activities of daily living-namely, 43% of subjects (41/95) with progressive disorders and 14% of subjects (12/86) with non-progressive disorders. The prevalence of unmet need was higher among subjects whose sole regular professional contact was with health services personnel (48 (40.3%) of 119 subjects). Only 18 (31.6%) of the 57 subjects with communication disorders had ever been assessed by a speech therapist. CONCLUSIONS--This study shows that the needs of severely physically disabled adults in the community--especially those with progressive disorders--are being monitored inadequately by health professionals.     

Met and unmet needs of dependent older people according to the Camberwell Assessment of Need for the Elderly (CANE): A scoping review

In order to address the complexity of needs of dependent older people, multidimensional and person-centered needs assessment is required. The objective of this review is to describe met and unmet needs of dependent older people, living in the community or in institutions, and the factors associated with those needs. Selection criteria included papers about need asessment which employed the Camberwell Assesment of Need for the Elderly (CANE). A search through MEDLINE, SCOPUS, WOS and CINHAL databases was carried out. Twenty-one articles were finally included. Unmet needs were found more frequently in psychosocial areas (mainly in “company”, “daytime activities” and “psychological distress”) and in institutionalized population. In addition, unmet needs were often associated with depressive symptoms, dependency, and caregiver burden. Discrepancies between self-reported needs and needs perceived by formal and informal caregivers were identified. It is important that professionals and caregivers try to make visible the perspective of older people and their psychological and social needs, particularly when the person is dependent, depressed or cognitively impaired.