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Pregnancy and antenatal care: the attitudes and experiences of Asian women.

Asian women living in the East End of London were interviewed in English or in their own language to assess their attitudes to and experiences of pregnancy and antenatal care and to consider some factors which may influence their experiences, especially their fluency in English. In some respects Asian women's experiences were similar to those of non-Asian women reported in other studies, e.g. similar levels of nausea and lack of tie-up between nausea and negative reactions to pregnancy. However there were also some differences, e.g. Asian women expressed greater concern about the sex of the child and about eating 'cool' foods to counterbalance the hot state of pregnancy. Asian women were good patients: they attended antenatal clinics, read the leaflets provided and about half attended antenatal classes, although some were keener than others to seek information about pregnancy and childbirth and only a quarter bought books or watched videos. Less than half of the women were living in extended families and receiving support from in-laws in the traditional way. Those living in nuclear families received support from friends, neighbours and especially husbands. There were considerable individual differences in women's reactions and experiences. Women who spoke little or no English were less knowledgeable and had lived for a shorter time in the UK than women who were fluent in English. Leaflets in languages women can read and link workers at clinics helped some women.

Acculturation↗

Assessing and diagnosing developmental disorders that are not evident at birth: parental evaluations of intake procedures.

Studies of parental satisfaction with the way in which diagnostic information is imparted have generally focused on conditions that are evident from birth. Diagnostic disclosure for disorders in which the onset is later, and less readily identifiable, has received less attention. The present study investigated parents' views of diagnostic procedures for children whose developmental delays only became apparent as they grew older. The degree of satisfaction was related to the type of diagnosis given but 2 weeks after the assessment 87% of parents described themselves as being very or fairly satisfied. However, levels of satisfaction were lower at a later follow-up than they had been initially. Moreover, several specific aspects of the assessment fell short of the ideal model and parents offered a number of practical and cost-effective suggestions as to how these could be remedied. These ranged from ways in which pre-assessment procedures could be made more useful, how diagnostic information should be presented and how the physical setting could be improved.

Adolescent↗

Family-centred service: moving ideas into practice.

BACKGROUND: With parents more involved in their child's day-to-day care, concepts of family-centred service (FCS) are increasingly adopted in children's health and rehabilitation service organizations. METHODS: In this paper, we report the results of a study to develop and evaluate educational materials for parents, service providers and health sciences students about FCS. The materials focus on the nature and philosophy of FCS, and the practical skills and systemic changes required for its implementation. RESULTS: Thirty-six participants (12 families, 12 service providers and 12 rehabilitation science students) were randomly assigned to receive one of the six FCS educational packages, each containing three FCS educational sheets. Participants' ratings of the format and content, and the impact of the FCS Sheets were very high, with overall means above 5.0 on a 7-point scale. Using a mixed model analysis, we found significant differences in participants' ratings of familiarity with the materials (students were less familiar than service providers). After statistical adjustment for familiarity, there were no significant differences between the groups or the packages on ratings of format and content or impact. CONCLUSIONS: There were no significant differences in the way in which the participant groups rated the impact of the FCS Sheets and the specific packages did not have an effect on the participants' ratings. The FCS educational materials, even those less familiar to participants, were rated highly on format and content, and impact. Results indicate that the material was perceived to be important to each group, and was formatted and written in a way that was easy to understand. This finding counters current recommendations in the knowledge transfer literature that suggest different versions should be written for different target groups.

Adolescent↗

A survey of the quality of information leaflets on hayfever available from general practices and community pharmacies.

BACKGROUND: Hayfever affects at least one in 10 people. The majority of hayfever is managed in the community setting where the management options are pharmaceutical and behavioural. Hayfever medications are available over the counter and on prescription from the general practitioner. Patient information leaflets are published to augment the advice given and to promote self-management, but these leaflets have rarely been subjected to critical review. OBJECTIVE: To assess the quality of patient information leaflets written for people with hayfever and available from general practices and from community pharmacists. METHOD: A structured review of patient information leaflets about hayfever. During the peak grass pollen season copies of all leaflets available were collected from a random sample of community pharmacists and general practices in Wessex. The characteristics of the leaflet were recorded and the contents and presentation of each one was reviewed using the British Medical Association patient information appraisal system. Readability was assessed using the Simple Measure of Gobbledegook (SMOG). Two allergy-accredited specialists assessed each leaflet for accuracy. RESULTS: During the peak pollen season no leaflets were available in 30% of the Community Pharmacists and 23% general practices. In total, 38 different leaflets were identified. All the leaflets reviewed were written for adults. Forty-seven percent of the leaflets had no publication date and one-third of those dated were at least 5 years old. In general the leaflets scored highly on issues of presentation, but less than half contained information on the full range of management and treatment options, many being biased towards a single or limited range of interventions. Seventy-nine percent leaflets were produced or sponsored by pharmaceutical companies and gave prominence to their own products. All the leaflets had readability scores requiring at least secondary education (SMOG score equal or greater than 9). At least one factual inaccuracy was identified in four-fifths of leaflets. CONCLUSION: A large number of leaflets are published for people with hayfever, but they are of variable quality and not accessible to all patients because of limited distribution or high readability scores. If all patients are to benefit from written information the authors and publishers of leaflets need to follow published recommendations, especially with respect to content and readability. In the absence of a national public health information strategy or a body that systematically vets patient information materials, clinicians must pay attention to the quality of information provided for or obtained elsewhere by their patients.

Adult↗

Development and evaluation of an information booklet/decision-making guide for patients with colorectal cancer considering therapy in addition to surgery.

The aim of this project was to develop and evaluate a decision-making guide for patients with colorectal cancer contemplating adjuvant therapy. Initially, a focus group was held, and then a draft booklet was developed, which was reviewed by patients and professionals. A subsequent revised booklet and a questionnaire were mailed to 24 patients and 32 professionals for evaluation. Further changes resulted in the final 100-page decision-making guide, which had a Flesch-Kincaid reading level of 8.0 and DISCERN rating 5. Seventeen patients (71%) and 22 professionals (69%) completed the questionnaire. All patients agreed/strongly agreed the guide was 'informative' and 'written in a way you like' and 94% considered it 'helpful for making decisions'. Professionals found it 'informative' (95%), 'written in a pleasing style' (95%), 'easy to understand' (91%) and felt it would 'help patients make decisions' (76%), 'be appropriate to give to patients' (91%) and would 'improve patient knowledge and preparedness' (100%). Further work aims to assess the impact of the guide upon patient outcomes.

Adult↗

Study of the effects of education on the management of urine drainage systems by patients and carers.

A randomized controlled trial was undertaken to test the effects of an education programme, which included an information booklet and demonstration, on the management of urine drainage systems by patients and carers. A total of 45 patients, new and established users, were included. Data were collected at pretest, test and follow-up visits. The education programme was found to improve significantly the performance of handwashing after bag emptying and before and after bag changing, although this effect did not persist over time. The findings are discussed with a number of conclusions drawn and recommendations for nursing practice.

Aged↗

Patient information after ruptured intracranial aneurysm.

AIM: This paper reports an investigation into the effects of increased information for patients treated for intracranial aneurysm rupture. BACKGROUND: Intracranial aneurysm rupture is a grave condition that requires immediate care. It can be treated in two different ways, by surgery or by endovascular procedure. Intracranial aneurysm rupture can mean great changes in life, both for the patient and their spouse or relatives. METHODS: An intervention study was conducted using a quasi-experimental design. Participants were recruited consecutively over a period of 12 months and consisted of 62 patients treated for intracranial aneurysm rupture at a Swedish neurosurgical clinic. They were divided into two groups: an intervention group, who received written and oral information, and a comparison group, who received only oral information. INSTRUMENTS: Self-report questionnaires were sent to patients' homes 1-3 months after the aneurysm rupture. The questionnaires consisted of one study-specific instrument with questions about understanding of the information given and the State-Trait Anxiety Inventory, which measures worry or anxiety. FINDINGS: The intervention group considered that the information that they received was somewhat easier to understand and that it corresponded more closely to their needs, compared with the comparison group. The majority of patients in both groups expressed a need for more and improved information. Levels of anxiety were high for the majority of patients, but no significant difference was evident between groups. Furthermore, the results showed that the majority of patients were given information without their spouse or relatives being present. CONCLUSION: Increased information seems to be needed for these patients. There is a need to continue the work to improve information-giving to them and their relatives.

Aneurysm, Ruptured↗

Postoperative mobilization of patients with abdominal aortic aneurysm.

AIM: This paper reports on a study which aimed to evaluate the effects of structured written preoperative information on patients' postoperative psychological and physical wellbeing after surgery for abdominal aortic aneurysm (AAA). BACKGROUND: The possible benefits of current booklets written by professionals on postoperative psychological and physical wellbeing in patients with AAA are unknown. Previous studies have shown that preoperative information has a favourable effect on both mood state and physical mobilization. METHOD: Fifty-two patients admitted for elective repair of AAA were selected consecutively and randomized to receive only verbal (control group), or verbal and written information in booklet form (experimental group). The booklet contained procedural and sensory information about the disease and its treatment. Two questionnaires were used to establish whether the booklet had any effect on perceived health, psychological and physical wellbeing postoperatively. RESULTS: The two groups were similar regarding their perceived health but differed significantly regarding psychological wellbeing pre- and postoperatively. Patients in the experimental group were significantly sadder both pre- and postoperatively compared with those in the control group. Both groups were similar in postoperative physical wellbeing. CONCLUSION: This group of patients often has asymptomatic disease, with a short interval between diagnosis and major surgery. When patients receive an information booklet during this period, this seems to cause more worries than anticipated. Hence, a more supportive educational programme might benefit this patient group, both pre- and postoperatively.

Activities of Daily Living↗

Central and peripheral information source use among rural and remote Registered Nurses.

AIMS: This paper reports a study examining the use of central (colleagues, inservice and newsletters) and peripheral information sources (Internet, library, journal subscriptions and continuing education) among a large sample of rural and remote nurses and explores the factors associated with the use of particular peripheral information sources. BACKGROUND: There have been few studies of the specific sources of information accessed by Registered Nurses, particularly rural or remote nurses, and the characteristics of nurses and their organizations that are associated with the use of particular information sources. METHODS: A questionnaire survey was conducted with 3933 Registered Nurses from all regions of rural and remote Canada between October 2001 and July 2002. We used frequencies and cross-tabulations to describe rates of information use, and forward selection logistic regression with likelihood ratio selection to build the best-fitting model of the variables that affected the odds of using each peripheral information source. RESULTS: Nursing colleagues ranked as the information source most frequently used, and the Internet and library ranked lowest. On average, nurses used a statistically significantly greater number of central than peripheral sources. Peripheral information source use was higher among nurses who had access to current information, opportunities to share their knowledge with others, higher education levels, were in positions of authority and worked with healthcare students. The associations between age and geographical location varied according to the peripheral information source under consideration. CONCLUSIONS: The vast majority of rural and remote nurses used at least one peripheral information source to inform their practice. Increasing the number of research sources used by these nurses requires attention to issues of information access in these areas, as well as issues of staff recruitment and retention of staff in under-serviced rural and remote regions.

Adult↗

Prevalence, self-efficacy and perceptions of conflicting advice and self-management: effects of a breastfeeding journal.

AIM: This paper reports an assessment of the effects of a breastfeeding journal on breastfeeding prevalence and perceptions of conflicting advice, self-management and self-efficacy. BACKGROUND: Breastfeeding prevalence rates in most developed countries are not meeting recommendations. Women's concerns about inconsistent advice, limited involvement in decision-making, accessibility of information and inappropriate follow-up have been recognized. Research on evaluation of interventions addressing these concerns and including antenatal and early postnatal periods is required. Method. An intervention study was conducted from July 2003 to April 2004, with control and intervention groups recruited sequentially. The intervention group received a breastfeeding journal at 36 weeks antenatally in breastfeeding classes that were attended at different times by intervention and control group members. The intervention and control groups were compared during postpartum hospitalization and 12 weeks for breastfeeding prevalence and perceptions of self-efficacy, conflicting advice and self-management. FINDINGS: No statistically significant differences were noted between the intervention and control groups in breastfeeding prevalence at 12 weeks or self-efficacy during hospitalization. There was a statistically significant difference between groups in conflicting advice at both times. Although conflicting advice continues to present a dilemma for women, levels of conflicting advice did not explain breastfeeding self-efficacy. Breastfeeding self-management was a statistically significant contributor to breastfeeding prevalence prior to the addition of breastfeeding self-efficacy. CONCLUSIONS: Women's perceptions of their ability to manage and be actively involved in decision-making explained breastfeeding prevalence at 12-week postpartum. Efforts to encourage women's involvement in decision-making about breastfeeding are a useful strategy to promote breastfeeding.

Adult↗

Comparative evaluation of patient information leaflets by pharmacists, doctors and the general public.

This study was undertaken to compare and contrast the views of pharmacists, general practitioners (GPs) and the general public on the value or otherwise of pharmacy-generated patient information leaflets. All three groups perceived these leaflets to be useful and an aid to improving compliance. Concerning the information included in leaflets, GPs rated the inclusion of a section on side-effects as being the least important, whilst pharmacists and the general public rated information on the storage of medicines as being least important. Pharmacists' estimates on what percentage of patients actually read leaflets were significantly lower than estimates by the general public. General practitioners and pharmacists generally concurred on the types of patients for whom leaflets are considered unsuitable, although a significantly higher percentage of pharmacists than GPs identified unsuitable patients. There were reservations by the pharmacists concerning the cost-effectiveness of leaflet facilities and on the value of leaflets compared with verbal counselling. The general public expressed the view that a leaflet facility would affect their choice of pharmacy and that they would be prepared to wait an additional short time to receive such a leaflet. Almost all GPs thought that it was in the patient's best interest to receive an information leaflet.

Adolescent↗

Continuing medical education case study series. An innovative programme for general practitioners on malignant melanoma.

Increasing interest in continuing medical education is reflected in greater demand for educational programmes. Content and educational strategies should be appropriate to the needs of the target audience. Proper matching of content and strategies to target needs of users requires the instructional design to be carefully planned and based on a needs-assessment study. We illustrate the influence of educational needs on content and learning strategies through an educational programme for general practitioners on the subject of malignant melanoma. Its design includes: i. a trigger leaflet; ii. a core text; iii. a set of interactive case studies; iv. a job-aid card; v. a follow-up leaflet; and vi. recorded messages available by telephone. It addressed, in particular, the key decision to be taken by the general practitioner: 'When should I refer a patient with a suspected early melanoma: when should I merely reassure the patient?' Doctors were invited, in the programme, to make decisions about referral of patients. They received immediate feedback on their decisions. Various strategies reinforced this feedback.

Diagnosis, Differential↗

A simple patient-initiated intervention to increase antenatal detection of breech presentation at term.

Antenatal detection of breech presentations at 35-37 weeks is necessary to allow adequate time for decision making about external cephalic version (ECV) and/or caesarean section. This study aimed to increase antenatal detection of breech presentation and referral for ECV using an inexpensive patient prompt (a simple brochure encouraging pregnant women to ask how their baby is presenting) and posters reminding clinicians to assess presentation. The interventions were evaluated using a before-after (single time series) study design. The records of women who had a breech presentation in late pregnancy were audited for 12 months before (n = 122) and 12 months after (n = 129) the introduction and implementation of the intervention. There was a statistically significant increase in women with a breech presentation who were assessed antenatally for ECV eligibility, from 75 (61%) before the intervention to 100 (78%) after the intervention. In the before-intervention period, 55 (60%) were identified as eligible for ECV and of these 32 (58%) had an ECV. After the intervention, 80 (75%) were identified as eligible for ECV and 46 (58%) had an ECV. A number of unanticipated events occurred during the study period, so although there was better identification of women eligible for ECV during the after-intervention phase we cannot be sure whether this is an intervention effect or attributable to other reasons. Further, there was no increase in the uptake of ECV nor a reduction in caesarean sections for breech presentation. The difficulties associated with before-after studies are highlighted.

Adult↗

Failure of the revised pre-donation guidelines to prevent people with a history of high-risk behaviour from donating blood.

We have evaluated the effectiveness of the alteration in the literature aimed at the self-exclusion of blood donors with a history of high-risk behaviour. Since the introduction of anti-HCV screening on 1 September 1991 all HCV-positive donors in the Trent Region have been invited for interview by Blood Transfusion medical staff to ascertain risk factors for HCV infection. We have compared the 5-month periods before (1 September, 1992 to 31 January, 1993) and after (1 February, 1993 to 30 June, 1993) the introduction of the amended literature on 1 February, 1993. No differences between the two time periods were noted for the prevalence rate of HCV infection amongst new or repeat donors, or history of risk factors or specific exclusion criteria. The new literature is failing to exclude people with a history of high-risk behaviour from donating blood and further study of this problem is urgently required.

Adult↗

Ensuring quality information for patients: development and preliminary validation of a new instrument to improve the quality of written health care information.

BACKGROUND: Despite the recent focus on improving the quality of patient information, there is no rigorous method of assessing quality of written patient information that is applicable to all information types and that prescribes the action that is required following evaluation. OBJECTIVE: The aims of this project were to develop a practical measure of the presentation quality for all types of written health care information and to provide preliminary validity and reliability of the measure in a paediatric setting. METHODS: The Ensuring Quality Information for Patients (EQIP) tool was developed through a process of item generation, testing for concurrent validity, inter-rater reliability and utility. Patient information managers and health care professionals tested EQIP in three annual audits of health care leaflets produced by a children's hospital. RESULTS: The final tool comprised 20 items. Kendall's tau B rank correlation between EQIP and DISCERN was 0.56 (P = 0.001). There was strong agreement between intuitive rating and the EQIP score (Kendall's tau B = 0.78, P = 0.009). Internal consistency using Cronbach's alpha was 0.80. There was good agreement between pairs of raters (mean kappa = 0.60; SD = 0.18) with no differences based on types of leaflets. Audits showed significant improvement in the number of leaflets achieving a higher quality EQIP rating over a 3-year period. CONCLUSIONS: EQIP demonstrated good preliminary validity, reliability and utility when used by patient information managers and healthcare professionals for a wide variety of written health care information. EQIP uniquely identifies actions to be taken as a result of the quality assessment. Use of EQIP improved the quality of written health care information in a children's hospital. Wider evaluation of EQIP with written information for other populations and settings is recommended.

Humans↗

A randomized trial among women with heavy menstruation -- impact of a decision aid on treatment outcomes and costs.

OBJECTIVE: To evaluate the effects of a decision aid for menorrhagia on treatment outcomes and costs over a 12-month follow-up. DESIGN: Randomized trial and pre-trial prospective cohort study. SETTING AND PARTICIPANTS: Gynaecology outpatient clinics in 14 Finnish hospitals, 363 (randomized trial) plus 206 (cohort study) patients with menorrhagia. INTERVENTION: A decision aid booklet explaining menorrhagia and treatment options, mailed to patients before their first clinic appointment. MAIN OUTCOME MEASURES: Health related quality of life, psychological well-being, menstrual symptoms, satisfaction with treatment outcome, use and cost of health care services. RESULTS: All study groups experienced overall improvement in health-related quality of life, anxiety, and psychosomatic and menstrual symptoms, but not in sexual life. Treatment in the intervention group was more active than in the control group, with more frequent course of medication and less undecided treatments. However, there were no marked disparities in health outcomes, satisfaction with treatment outcome and costs. Total costs (including productivity loss) per woman because of menorrhagia over the 12-month follow-up were 2760 and 3094 in the intervention and control group, respectively (P = 0.1). The pre-trial group also had a significantly lower rate of uterus saving surgery compared with the control group, but no difference in costs because of menorrhagia treatment. CONCLUSION: Despite some differences in treatment courses, a decision aid for menorrhagia in booklet form did not increase the use of health services or treatment costs, nor had it impact on health outcomes or satisfaction with outcome of treatment.

Adult↗

A preliminary trial of couple screening for cystic fibrosis: designing an appropriate information leaflet.

An information leaflet, inviting participation in an antenatal screening trial for cystic fibrosis, was sent to 388 couples together with the pregnant woman's first clinic appointment. The leaflet pointed out that couples would be treated as a unit and that further action would be taken only if both partners were found to carry mutant alleles. Participants and non-participants were also asked to fill in a questionnaire eliciting their views on the leaflet. Three hundred and twelve (80%) questionnaires were returned and 253 (65%) couples elected to be screened. More than 90% of respondents found the leaflet easy to understand, although about 10% wanted more information on cystic fibrosis. The main reason for entering the trial was to avoid the birth of an affected child, and the main reason for non-entry was opposition to termination of pregnancy. There was little anxiety about the prospect of being screened. However, more than a third of couples mis-identified their risk of both carrying a CF gene, despite the figure of 1 in 600 being explicitly stated in the leaflet.

Comprehension↗

Improving transfer from the intensive care unit: the development, implementation and evaluation of a brochure based on Knowles' Adult Learning Theory.

This paper describes the development, implementation and evaluation of a transfer brochure for family members of patients in an intensive care unit (ICU) to improve patient transfer to a general ward. When family members fail to understand information, they respond in ways that affect patient recovery. The brochure was designed within Knowles' Adult Learning Theory framework and developed using a multidisciplinary team. A mixed design was used to collect data from families and nurses. Results indicate that the brochure helped nurses to address the individual family's issues during transfer from ICU. Furthermore, 95% of nurses (n = 33) recommended its introduction for all future transfers. Family members (n = 82) who received the brochure as part of their transfer were significantly more satisfied with all aspects of transfer than those who experienced ad hoc transfer methods (n = 80). These results provide strong support for Knowles' Adult Learning Theory as an educational foundation for adult learning.

Adult↗