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PubMed2005

Exploring e-Health usage and interest among cancer information service users: the need for personalized interactions and multiple channels remains.

Since searching for health information is among the most popular uses of the Internet, we analyzed a survey of 6,019 callers to the National Cancer Institute's (NCI's) Cancer Information Service (CIS) to assess Internet usage and interest in technologies to access health and cancer information. Findings suggest that about 40% of CIS callers used the Internet to obtain cancer information and, of these, only about 20% found all the information they sought. Nearly 33% of Internet users called the CIS to discuss information found on the Internet; most (>90%) reported that the CIS was helpful. Those who sought cancer information on the Internet were more likely to call the CIS about this information if they found all or most of the information they were seeking, compared with those who found some or little of the information. New communication services endorsed by most CIS callers included e-mails from an information specialist and telephone support from the CIS while on the Internet. The survey results indicate the importance of multiple access points, both traditional and technology based, and that there is still a need for more traditional, personalized forms of health communication. A crucial question is how best to harness and integrate these new technologies within the current generation of mediated health information systems.

Adult↗
PubMed2001

The cost effectiveness of specialised facilities for service users with persistent challenging behaviours.

Little systematic research relates specifically to the last people to leave a psychiatric hospital at the end of a closure programme. The long-running evaluation of the reprovision of services from Friern Hospital in North London allowed a special study to be made of such a group (67 people in all), whose range of problem behaviours made placement in community settings most difficult. The patients were relatively young, with a shorter length of stay than the remainder of the former long-stay hospital population. They were assessed three times: before leaving Friern, and one and 5 years after relocation. The social and clinical characteristics of each person were measured, and the full costs of their care calculated. The "difficult-to-place" patients moved to four highly staffed rehabilitation facilities, where the total cost of their care was, on average, 1230 UK pounds per week. There was no overall change in their psychiatric state over the 5 years after they left Friern Hospital although, in the longer-term, they gained skills in several areas of daily functioning. Most importantly, there was a fall of almost 50% in the number of challenging behaviours exhibited by the study group. At the five-year follow-up point, the cost of care had fallen, on average, by 170 UK pounds per week, and 24 people had been able to move to more independent accommodation arrangements. Study participants had gained a new network of community service contacts, and used services provided by a greater variety of agencies. The indicators suggest that high expenditure on alternative care was justified retrospectively by overall long-term outcomes. An important policy lesson from the Friern Hospital reprovision study is that adequate funds should be reserved until the end of the closure programme to allow the investment of resources in provision for patients with the most severe problem behaviours.

Adult↗
PubMed2006

Health professionals' and service users' interpretation of screening test results: experimental study.

OBJECTIVE: To investigate the accuracy of interpretation of probabilistic screening information by different stakeholder groups and whether presentation as frequencies improves accuracy. DESIGN: Between participants experimental design; participants responded to screening information embedded in a scenario. SETTING: Regional maternity service and national conferences and training days. PARTICIPANTS: 43 pregnant women attending their first antenatal appointment in a regional maternity service; 40 companions accompanying the women to their appointments; 42 midwives; 41 obstetricians. Participation rates were 56%, 48%, 89%, and 71% respectively. MEASURES: Participants estimated the probability that a positive screening test result meant that a baby actually had Down's syndrome on the basis of all the relevant information, which was presented in a scenario. They were randomly assigned to scenarios that presented the information in percentage (n = 86) or frequency (n = 83) format. They also gave basic demographic information and rated their confidence in their estimate. RESULTS: Most responses (86%) were incorrect. Obstetricians gave significantly more correct answers (although still only 34% [corrected]) than either midwives (0%) or pregnant women (9%). Overall, the proportion of correct answers was higher for presentation as frequencies (24%) than for presentation as percentages (6%), but further analysis showed that this difference occurred only in responses from obstetricians. Many health professionals were confident in their incorrect responses. CONCLUSIONS: Most stakeholders in pregnancy screening draw incorrect inferences from probabilistic information, and health professionals need to be aware of the difficulties that both they and their patients have with such information. Moreover, they should be aware that different people make different mistakes and that ways of conveying information that help some people will not help others.

Caregivers↗
PubMed2004

Chronic arthritis in children and adolescents in two Indian health service user populations.

BACKGROUND: High prevalence rates for rheumatoid arthritis, spondyloarthopathies, and systemic lupus erythematosus have been described in American Indian and Alaskan Native adults. The impact of these diseases on American Indian children has not been investigated. METHODS: We used International Classification of Diseases-9 (ICD-9) codes to search two Indian Health Service (IHS) patient registration databases over the years 1998-2000, searching for individuals 19 years of age or younger with specific ICD-9-specified diagnoses. Crude estimates for disease prevalence were made based on the number of individuals identified with these diagnoses within the database. RESULTS: Rheumatoid arthritis (RA) / juvenile rheumatoid arthritis (JRA) was the most frequent diagnosis given. The prevalence rate for JRA in the Oklahoma City Area was estimated as 53 per 100,000 individuals at risk, while in the Billings Area, the estimated prevalence was nearly twice that, at 115 per 100,000. These rates are considerably higher than those reported in the most recent European studies. CONCLUSION: Chronic arthritis in childhood represents an important, though unrecognized, chronic health challenge within the American Indian population living in the United States.

Adolescent↗
PubMed2004

Mental health service user involvement in England: lessons from history.

This historical analysis draws attention to differing assumptions, which promote or limit user involvement in nursing practice. The meaning of the term 'user involvement' is analyzed with reference to varying models. A continuum is offered to illustrate the relationship between assumptions about people with mental health problems and their involvement in care. It is argued that the range of views concerning recipients of mental health services, from being dangerous and irrational to being considered equal partners with health professionals, creates an unresolved tension that has existed through the ages. The key to resolving this tension is for all parties openly to acknowledge conflicts between their views and those of others and engage in meaningful dialogue about them. In this way the lessons from history may be learned.

England↗
PubMed1999

The measurement of expressed emotion in relationships between staff and service users: the use of short speech samples.

OBJECTIVES: Research on expressed emotion (EE) has demonstrated a remarkable consistency across cultures and over time; the psychosocial climate in relationships is important in determining the course of problems in mental health. The rating of EE might be described as the least accessible aspect of this literature to those who have not undertaken a training course. The purpose of this study was twofold: first, to obtain EE ratings for staff-patient relationships via interview and speech sample methods, in order to estimate the validity of the shorter method (the Five-Minute-Speech-Sample, FMSS); second, to examine the generalizability of the FMSS rating method to raters who were not previously trained to rate EE. DESIGN AND METHOD: Staff (N = 15) working in a day hospital service for people with enduring mental health problems were interviewed about their work with at least one patient (N = 32), and also asked to provide an FMSS on each relationship. Ratings of FMSS-EE were subsequently compared with the Camberwell Family Interview-EE ratings. Following an hour-long training period, the FMSS-EE ratings of five postgraduate students were then compared with those of a criterion rater. RESULTS: Correspondence between the two measures of EE was found to be good, with overall agreement achieved in 89.7% of cases. Raters with very limited training in the concept and rating of EE were accurate in identifying the overall rating of the relationship in question, but less accurate in identifying specific critical comments. CONCLUSION: The FMSS technique can be used reliably to identify negative relationships even by raters given very limited training. Clinical and research applications are suggested.

Adult↗
PubMed2006

Demographic factors and clinical correlates of burden and distress in relatives of service users experiencing schizophrenia: a study from south-western Nigeria.

Caregivers burden is an important area of clinical work that is often neglected, particularly in relatives of patients with psychosis. The aim of the present study is to examine if some demographic factors and symptoms of illness bear a relationship with burden and distress levels in their caregivers. This cross-sectional study involved patients with chronic schizophrenia and their relatives. The Carer Burden Index and the 30-item General Health Questionnaire was used to assess burden and distress in relatives, and positive and negative symptoms of schizophrenia in the patients were rated using the Brief Psychiatric Rating Scale and the Scale for Assessment of Negative Symptoms, respectively. High levels of emotional distress and burden were observed in the caregivers and they were significantly associated with some demographic variables. They were also significantly associated with positive and negative symptoms of schizophrenia. Because Nigerian families continue to play a primary caregiving role for their relatives experiencing schizophrenia, there is a need to focus on specific interventions that will reduce their high levels of distress and burden.

Adult↗
PubMed2006

Involving users in service planning: a focus group approach.

This paper outlines the way in which a focus group approach was used to involve service users in the possible reconfiguration of follow-up services for breast cancer patients at a North London hospital. The focus group was used to identify the priority issues for users and the development of an objective questionnaire, to survey all current service users. Within the National Health Service (NHS) the concept of user involvement has been embodied in contemporary health policy, and has become an important constituent of current policy direction. This study was the first stage of a larger stakeholder project that aimed to involve service users and clinicians in developing a new model of breast cancer follow-up service. From the focus group emerged five key themes around breast cancer follow up. They were: The need for reassurance after the diagnosis of cancer. Continuity of care. Privacy and dignity and other elements of the examination technique. Information and the detection of new symptoms. The opportunity to discuss feelings and worries. In this paper, the nature of breast cancer follow-up services is outlined, and the difficulties associated with such services are discussed. The background to user involvement within the United Kingdom is explored, and the strategies that have previously been used are considered. The practical issues involved in using the focus group approach are examined, and the experience of using such an approach is outlined in this study. The involvement of service users as a key stakeholder in the process of planning change, through a participatory research strategy, ensured that their voices were heard alongside those of both hospital and primary care staff.

Adult↗
PubMed2006

Perceived effectiveness of medications among mental health service users with and without alcohol dependence.

OBJECTIVE: No consensus exists on the use of psychiatric medication among patients with co-occurring mental health and alcohol disorders. The authors investigated patterns of use of psychiatric medication and perceived effectiveness of mental health treatment among users of mental health care with and without alcohol dependence. METHODS: Data were obtained from the 2001 to 2003 National Survey on Drug Use and Health. The sample consisted of respondents who reported receiving mental health treatment in the past year (N=11,872). Rates of psychiatric medication use were compared between mental health care patients who were alcohol dependent and those who were not. Patient-reported effectiveness of mental health treatment was examined among alcohol-dependent and non-alcohol dependent patients who did and did not receive psychiatric medication. RESULTS: No statistically significant differences in rates of use of psychiatric medication were found between those with and without alcohol dependence (76.2 percent and 75.9 percent, respectively). Among alcohol-dependent patients, those who received psychiatric medication were significantly more likely than those who did not receive such medication to report that treatment helped a lot or a great deal (OR=2.87, 95 percent CI=1.57 to 2.56, p<.001). Among those who received psychiatric medication, no statistically significant differences were found between alcohol-dependent and nondependent respondents in patients' ratings of treatment effectiveness. CONCLUSIONS: Most alcohol-dependent individuals in mental health treatment received psychiatric medication, despite the lack of guideline support in this area. A large majority of those with alcohol dependence who received psychiatric medication reported that mental health treatment was effective.

Adolescent↗
PubMed2000

Prevalence of problem gambling among community service users.

The prevalence of pathological gambling has been investigated in many countries over the past 10 years. In the United States and Canada, it is estimated that between 1 and 2% of the general population suffer from excessive gambling (Ladouceur, Jacques, Ferland, & Giroux, 1999; Shaffer, Hall, & Vander Bilt, 1997). Some researchers have argued that telephone surveys underestimate the prevalence of this disorder given that many gamblers may be unable to participate in them. Using the South Oaks Gambling Screen, the present study assessed the prevalence of pathological gambling among 87 individuals who rely on community assistance for their survival. The findings indicate that 17.2% meet the criteria for pathological gambling; a prevalence that is approximately 8 times greater than that of the general population. The social implications of these results are discussed.

Adolescent↗
PubMed2004

Attitudes to long-term use of benzodiazepine hypnotics by older people in general practice: findings from interviews with service users and providers.

The aim of this study was to explore beliefs and attitudes about continuing or stopping benzodiazepine hypnotics amongst older patients using such medicines, and amongst their general practitioners. One hundred and ninety two patients aged 65 and over who were long-term users of benzodiazepine hypnotics were recruited from 25 general practices in inner city and suburban London, as were 83 practice staff. The practices had been recruited into a randomised controlled trial of benzodiazepine withdrawal in long-term users. Semi-structured interviews were conducted with patients recruited to the trial, and non-standardized (conversational) interviews with practice staff. Sixty percent of long-term benzodiazepine users had taken their hypnotic for more than 10 years, and one-third for more than 20 years. Beliefs in the efficacy of hypnotics, and self-report of insomnia despite their use, varied according to the willingness to attempt withdrawal. The majority of patients reported no warnings from professionals about adverse effects of using benzodiazepine hypnotics. Half had tried to stop at some time but most attempts had been short-lived. Patients and doctors had distinctly different views of the advantages, disadvantages and risks of stopping benzodiazepine hypnotic use. Both increased patient awareness of the problems of long-term benzodiazepine use and an evidence-based approach to withdrawal efforts in primary care are necessary to reduce the consumption of medication that has little real benefit.

Aged↗