Objectives-To develop an outcome measure for patients with advanced cancer and their families which would cover more than either physical symptoms or quality of life related questions. To validate the measure in various specialist and nonspecialist palliative care settings throughout the UK. Design-A systematic literature review of measures appropriate for use in palliative care settings was conducted. In conjunction with a multidisciplinary project advisory group, questions were chosen for inclusion into the scale based on whether they measured aspects of physical, psychological, or spiritual domains pertinent to palliative care, and whether similar items had shown to be valid as part of another measure. A staV completed version was developed to facilitate data collection on all patients throughout their care, and a patient completed version was designed to enable the patient to contribute to the assessment of their outcomes when possible. A full validation study was conducted to evaluate construct validity, internal consistency, responsiveness to change over time, and test-retest reliability. Assessments were timed. Setting-Eight centres in England and Scotland providing palliative care, including inpatient care, outpatient care, day care, home care, and primary care. Patients-A total of 450 patients entered care during the study period. StaV collected data routinely on patients in care long enough to be assessed (n=337). Of these, 262 were eligible for patient participation; 148 (33%) went on to complete a questionnaire. Main measures-The
The objective of the study was to determine whether teams providing specialist palliative care improve the health outcomes of patients with advanced cancer and their families or carers when compared to conventional services. The study involved a systematic literature review of published research. The source of the data included studies identified from a systematic search of computerized databases (Medline, psychINFO, CINAHL and BIDS to the end of 1996), hand-searching specialist palliative care journals, and studying bibliographies and reference lists. The inclusion criteria for articles were that the study considered the use of specialist palliative care teams caring for patients with advanced cancer. Articles were assessed and data extracted and synthesized, with studies graded according to design. A variety of outcomes were considered by the authors. These addressed aspects of symptom control, patient and family or carer satisfaction, health care utilization and cost, place of death, psychosocial indices and quality of life. Overall, 18 relevant studies were identified, including five randomized controlled trials. Improved outcomes were seen in the amount of time spent at home by patients, satisfaction by both patients and their carers, symptom control, a reduction in the number of inpatient hospital days, a reduction in overall cost, and the patients' likelihood of dying where they wished to for those receiving specialist care from a multiprofessional palliative care team. It was concluded that all evaluations were of services considered to be leading the field, or were pioneering training and treatments. However, when compared to conventional care, there is evidence that specialist teams in palliative care improve satisfaction and identify and deal with more patient and family needs. Moreover, multiprofessional approaches to palliative care reduce the overall cost of care by reducing the amount of time patients spend in acute hospital settings.
There is increasing evidence to suggest that patients with cancer require more information about their disease and its consequences than they receive. In an attempt to address these needs, a variety of methods have been used to facilitate the passage of information from health professionals and other cancer information sources to cancer patients and their families. These include written material, telephone help-lines, teaching and audiovisual aids. Although these efforts have been well received, little attention has been given to the effectiveness of the methods employed. The aims of this paper were to systematically review randomized controlled trials that have evaluated methods of information-giving to cancer patients and their families. Relevant literature was identified through computerized databases, Internet cancer sites and bibliography searches. Multiple reviewers independently analysed the methodological quality of the papers according to agreed criteria. From this process, 10 studies were identified. Interventions ranged from written information to audiotapes, audiovisual aids and interactive medium. Individually tailored methods such as patient care records and patient educational programmes were also reviewed. The evidence indicated that the interventions had positive effects on a number of patient outcomes, such as knowledge and recall, symptom management, satisfaction, preferences, health care utilization and affective states. This was above and beyond the usual care provision. In the majority of studies the interventions had no effect on psychological indices. Furthermore, the review highlighted that certain methods should be based on individual preferences for information rather than uniformly administered.
Information generated using outcome measures to measure the effectiveness of palliative care interventions is potentially invaluable. Depending on the measurement tool employed the results can be used to monitor clinical care, carry out comparative research, provide audit data or inform purchasing decisions. However, the data collected can only ever be as good as the method used to obtain them. This review aimed to systematically identify and examine outcome measures that have been used, or proposed for use in the clinical audit of palliative care of patients with advanced cancer. Database searches were performed using MEDLINE (1991-1995), CANCERLIT (1991-1995), Healthplan (1985-1995), and 'Oncolink' on the internet. Further measures were located with the assistance of other professionals working in palliative care. The criteria for the inclusion and assessment of measures were a measure assessing more than one domain and a target population of advanced disease or palliative care Forty-one measures were identified, 12 of which satisfied the inclusion criteria. These contained between five and 56 items and covered aspects of physical, psychological and spiritual domains. Each measure meets some but not all of the objectives of measurement in palliative care, and fulfils some but not all of our criteria for validity, reliability, responsiveness and appropriateness.
In the course of the last twenty-five years, Africa has witnessed an astounding growth in the number and influence of non-governmental organizations (NGOs) in general, and more recently of African NGOs in particular. Initially, the literature on this was dominated by the concerns of the policy-making and NGO communities, drawing on liberal pluralist theory. Lately, an independent, critical literature has developed based on substantial empirical research.
Palliative day care has expanded rapidly in the recent years, but the types of care available vary. To understand more about the different models of day care we conducted a questionnaire survey of the 43-day care centres in North and South Thames Regions in England (total population 13.75 million). The questionnaire covered: management, staffing and organizational policies; the numbers, types and reasons for referral; and the services and care provided. Forty (93%) centres responded. Centres had operated for between 1 and 16 years, mean 8 years. A total of 2268 day care places (mean per centre, 57) were available per week--with an estimated 1.77 places per 10,000 population. Twenty centres had never had a waiting list or had to prioritize patients; 30 had a discharge policy. The mean time the longest patient had been attending was 4.5 years, range 1-12 years. There were a total of 3627 new referrals per year or 3.06 per 10,000 population. Of the 2054 patients recorded by day care centres during a week of detailed monitoring, 1850 (90%) had cancer and 204 had other diseases--most commonly HIV or AIDS, motor neurone disease or stroke. Thirty-four centres were managed by nurses, two by social work or social service professionals, and the remainder by people with other backgrounds. Most units had doctors, nurses, chaplains, managers, aromatherapists and hairdressers, but occupational therapists, social workers, chiropodists, dietitians and music and art therapists were much more varied, as was whether these posts were paid. The most common activities were: review of patients' symptoms or needs, monitoring symptoms, bathing, wound care, physiotherapy, hairdressing and aromatherapy. Centres describing themselves as more or mostly social were less likely to undertake daily assessment of new symptoms and wound care (chi-squared 13.0, 10.1, respectively, df 4, P < 0.05). However, we found no significant differences between centres describing themselves as more medical or more social in reported levels of staffing, who was in charge, funding or most activities. The findings suggest that there are core activities offered in palliative day care, but also variations in medical assessments, nurse-led clinics, trips, art and music therapy, and artistic activities.
The current discourse on ‘civil society’ in Africa, conducted by Northern governments, international NGOs, activists and academics, often presents civil society as the locus sine qua nonfor progressive politics, the place where people organise to make their lives better, even a site of resistance. This article seeks to remind us that, as originally theorized by Antonio Gramsci, civil society is a potential battleground. It also constitutes an arena in which states and other powerful actors intervene to influence the political agendas of organised groups with the intention of defusing opposition. This article examines the extent to which this form of civil society is being constituted in Africa, in particular, through Northern government support to African policy‐oriented organisations. It does this by looking at three quite distinct national contexts and investigating the relationship between the dominant development project in each, undertaken by the government in ‘strategic collaboration’ with donors and civil society. It focuses on Ghana, South Africa and Uganda during the late 1990s. All three countries have been paradigmatic in terms of donor visions for the continent and have attracted some of the largest aid packages that specifically target ‘civil society’. It is argued that donors have been successful in influencing the current version of civil society in these countries so that a vocal, well‐funded section of it, which intervenes on key issues of national development strategy, acts not as a force for challenging the status quo,but for building societal consensus for maintaining it.
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