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1.
Trent Jackson Kimberly Davis Lisa Haisfield David Dawson John Lynch James Regan Arnold Kwart Barlow Lynch Kathryn Taylor 《Patient education and counseling》2010
Objective
Increased long-term survival rates have led to a greater focus on the health-related quality of life (HRQL) of prostate cancer survivors. This study assessed the motivations of prostate cancer survivors for disclosing their diagnosis and treatment to close others, and their perceptions of their own and others’ responses to the disclosure.Methods
Prostate cancer survivors (N = 35) who were 24–36 months post-treatment for localized disease completed a semi-structured telephone interview. Open-ended questions concerning disclosure of men's diagnosis and treatment and their perceptions of their own and others’ reactions to the disclosure were included.Results
Regarding men's motivations for disclosing their diagnosis and treatment, men reported that they were seeking social support (SS) and that others had a ‘right to know.’ Further, the receipt of emotional support and feeling a sense of positive emotions were common following disclosure about their diagnosis and treatment. Participants reported continuing to discuss their treatment side effects 2–3 years post-treatment.Conclusion
Prostate cancer survivors reported an overall positive and supportive response following the disclosure of their diagnosis and treatment. Further examination of the relationship between SS and HRQL will be necessary to identify interventions to enhance the well-being of this growing population of survivors.Practice implications
Providers need to be aware of the extent and long-term nature of the side effects following treatment for prostate cancer. If providers encourage men to talk about their diagnosis, treatment, and side effects, providers may better understand men's experience with the disease, and men may be more likely to accept these commonly experienced changes, as well as seek treatment for them. These efforts may result in improved quality of life for survivors of prostate cancer. 相似文献2.
Samuel G. Smith Michael S. Wolf Austin Obichere Rosalind Raine Jane Wardle Christian von Wagner 《Patient education and counseling》2013
Objective
To design and user-test a ‘gist-based’ colorectal cancer screening information leaflet, which promotes comprehension of the screening offer.Methods
Twenty-eight individuals approaching screening age were recruited from organisations in deprived areas of England. Using a between-subjects design, we tested iterations of a newly-designed gist-based information leaflet. Participants read the leaflet and answered 8 ‘true’ or ‘false’ comprehension statements. For the leaflet to be considered fit-for-purpose, all statements had to be answered correctly by at least 80% of participants in each round. Alterations were made if this threshold was not met and additional rounds of testing were undertaken.Results
At round 1, answers to 2/8 statements did not meet the threshold. After changes, answers in round 2 did not reach the threshold for 1/8 statements. In round 3, all answers were adequate and the leaflet was deemed fit-for-purpose. Qualitative data offered solutions such as language and layout changes which led to improved comprehension of the leaflet.Conclusion
User-testing substantially improved the design and subsequent comprehensibility of a theory-driven gist-based colorectal cancer screening information leaflet.Practical implications
This leaflet will be evaluated as part of a large national randomised controlled trial designed to reduce socioeconomic inequalities in colorectal cancer screening participation. 相似文献3.
Frida Smith Eva Carlsson Dimitrios Kokkinakis Markus Forsberg Karl Kodeda Richard Sawatzky Febe Friberg Joakim Öhlén 《Patient education and counseling》2014
Objective
To characterize education materials provided to patients undergoing colorectal cancer surgery to gain a better understanding of how to design readable, suitable, comprehensible materials.Method
Mixed method design. Deductive quantitative analysis using a validated suitability and comprehensibility assessment instrument (SAM + CAM) was applied to patient education materials from 27 Swedish hospitals, supplemented by language technology analysis and deductive and inductive analysis of data from focus groups involving 15 former patients.Results
Of 125 patient education materials used during the colorectal cancer surgery process, 13.6% were rated ‘not suitable’, 76.8% ‘adequate’ and 9.6% ‘superior’. Professionally developed stoma care brochures were rated ‘superior’ and 44% of discharge brochures were ‘not suitable’. Language technology analysis showed that up to 29% of materials were difficult to comprehend. Focus group analysis revealed additional areas that needed to be included in patient education materials: general and personal care, personal implications, internet, significant others, accessibility to healthcare, usability, trustworthiness and patient support groups.Conclusion
Most of the patient education materials were rated ‘adequate’ but did not meet the information needs of patients entirely. Discharge brochures particularly require improvement.Practice implications
Using patients’ knowledge and integrating manual and automated methods could result in more appropriate patient education materials. 相似文献4.
Background
Advanced cancer patients experience considerable symptoms, problems, and needs. Early referral of these patients to specialised palliative care (SPC) could improve their symptoms and problems.The Danish Palliative Care Trial (DanPaCT) investigates whether patients with metastatic cancer, who report palliative needs in a screening, will benefit from being referred to ‘early SPC’.Methods/Design
DanPaCT is a clinical, multicentre, parallel-group superiority trial with balanced randomisation (1:1). The planned sample size is 300 patients. Patients are randomised to specialised palliative care (SPC) plus standard treatment versus standard treatment. Consecutive patients from oncology departments are screened for palliative needs with a questionnaire if they: a) have metastatic cancer; b) are 18 years or above; and c) have no prior contact with SPC. Patients with palliative needs (i.e. symptoms/problems exceeding a certain threshold) according to the questionnaire are eligible. The primary outcome is the change in the patients’ primary need (the most severe symptom/problem measured with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30)). Secondary outcomes are other symptoms/problems (EORTC QLQ-C30), satisfaction with health care (FAMCARE P-16), anxiety and depression (the Hospital Anxiety and Depression scale), survival, and health care costs.Discussion
Only few trials have investigated the effects of SPC. To our knowledge DanPaCT is the first trial to investigate screening based ‘early SPC’ for patients with a broad spectrum of cancer diagnosis.Trial registration
Current controlled Trials NCT013480485.
Objective
To examine the effect of patient narratives that discuss decision processes versus patient experiences on decisions about treatments for early stage breast cancer.Methods
We recruited 300 women with no previous history of breast cancer to imagine that they had been diagnosed with early stage breast cancer and to choose between mastectomy and lumpectomy with radiation. Before learning about their treatment options, participants were randomly assigned to one of four conditions with videotaped stories from fictitious cancer survivors, using a 2 (content: experience versus process) × 2 (emotional valence: positive only vs. positive and negative) factorial design, or a control condition with no stories. We measured information search, treatment intentions, and decision satisfaction.Results
Participants viewing process narratives spent more time searching for information. Participants viewing experience narratives reported a greater ability to imagine what it was like to experience the treatments; they also evaluated their decision more positively on several dimensions.Conclusions
Process narratives appeared to guide information search, and experience narratives improved evaluations of the decision process.Practice implications
There is no evidence that process and experience narratives ‘bias’ decisions in the same manner as outcome narratives. Further, their potential to focus patient attention on key information and increase patient confidence in decision making appears significant. 相似文献6.
Erin E. Kent Neeraj K. Arora Julia H. Rowland Keith M. Bellizzi Laura P. Forsythe Ann S. Hamilton Ingrid Oakley-Girvan Ellen B. Beckjord Noreen M. Aziz 《Patient education and counseling》2012
Objective
To investigate health information needs and their association with health-related quality of life (HRQOL) in a diverse, population-based sample of long-term cancer survivors.Methods
We analyzed health information needs from 1197 cancer survivors 4–14 years post-diagnosis drawn from two cancer registries in California. Multivariable regression models were used to identify factors associated with endorsement of total number and different categories of needs. The relationship between number of needs and HRQOL and effect modification by confidence for obtaining information was examined.Results
Survivors reported a high prevalence of unmet information needs in the following categories: side effects & symptoms: 75.8%; tests & treatment: 71.5%; health promotion: 64.5%; interpersonal & emotional: 60.2%; insurance: 39.0%; and sexual functioning & fertility: 34.6%. Survivors who were younger, non-White, and did not receive but wanted a written treatment summary reported a higher number of needs. Number of information needs was inversely related to mental well-being, particularly for those with low confidence for obtaining information (P < 0.05).Conclusion
These patterns suggest disparities in access to important health information in long-term survivors and that affect HRQOL.Practice Implications
Findings suggest a need for tailored interventions to equip survivors with comprehensive health information and to bolster skills for obtaining information. 相似文献7.
Objective
Review of studies published in the last 10 years about women seeking gynecological- or obstetrical care and physician's gender in relation to patient preferences, differences in communication style and patient satisfaction.Methods
Studies were identified by searching the online databases PubMed, PsycINFO, Embase and the Cochrane Library. The search strategies ‘gender’; ‘obstetrics’ and ‘gynecology’ were combined with ‘communication’; ‘physician–patient relations’; ‘patient preference’ and ‘patient satisfaction’.Results
After screening title and abstract, evaluating full text and quality assessment, 9 articles were included in this review. Most patients preferred a female rather than a male gynecologist–obstetrician. This was partly explained by a more patient-centered communication style used by female gynecologists–obstetricians. Also experience and clinical competence were important factors in choosing a gynecologist–obstetrician. It was not clear whether patient's age or ethnicity influenced patients gender preference. Patient satisfaction increased when gynecologists–obstetricians used a patient-centered communication style.Conclusion
Preference for a female gynecologist–obstetrician might be explained by a more patient-centered communication style used by female gynecologists–obstetricians. Using a patient-centered communication style increases patient satisfaction.Practice implications
To increase patient satisfaction, gynecologists–obstetricians should learn to integrate patient-centered communication style into the consultation. 相似文献8.
Objective
To improve our understanding of patient participation in health care consultations and decision-making by exploring a consultation that lies at the interface between mainstream care and complementary therapies.Methods
Thirty-four holistic consultations were observed at centres offering complementary therapies for cancer, followed by interviews with patients and focus groups with professionals.Results
A model of decision-making about complementary therapy use emerged from the data: ‘Advice: Assessor led decision’, ‘Confirmation: Joint decision’, ‘Access: Patient-led decision’ and ‘Informed: Patient-led decision’. Decision-making style was contingent on identifiable communication strategies in the preceding information-sharing and discussion phases of the consultation.Conclusion
This study confirms the importance of gauging patients’ preferences for level of participation in decision-making. Models of consultations are generally based on the assumption that a greater degree of patient participation is a good thing that access to information and decision-making power is sought by all patients. Data from this study suggest that, in this context at least, this is not necessarily the case. The study also stresses the dynamic nature of the consultation, in which roles are fluid rather than fixed.Practice implications
Insight were gained into professionals’ communication strategies and patients’ role preferences in decision-making, which may be applicable more widely. 相似文献9.
Entwistle VA France EF Wyke S Jepson R Hunt K Ziebland S Thompson A 《Patient education and counseling》2011,85(3):e291-e298
Objective
To investigate people's views of using ‘general facts’ and information about other people's ‘personal experiences’ for health-related decision-making.Methods
Sixty-two people, who between them had experience of five different focal health issues, participated in 12 focus groups and 9 interviews. Exploration of uses of the two types of information was supported by discussion of illustrative excerpts.Results
There was less discussion of ‘general facts’; participants thought it obvious that good decisions required these. Participants reported having used ‘personal experiences’ information to: recognise decisions that needed consideration; identify options; appraise options and make selections (including by developing and reflecting on their reasoning about possible choices); and support coping strategies. Their inclination to use ‘personal experiences’ information was apparently moderated by assessments of personal relevance, the motives of information providers and the ‘balance’ of experiences presented.Conclusion
People can use ‘personal experiences’ information in various ways to support their decision-making, and exercise some discrimination as they do.Practice implications
‘Personal experiences’ information may help people in a number of ways in relation to decision-making. However, ‘personal experiences’ information does not replace the need for ‘general facts’ and care should be taken when it is used in resources for patients. 相似文献10.
Objective
GPs sometimes use euphemisms rather than medical terms. The present study aimed to explore the relative impact of using the term ‘obese’ compared to GPs’ preferred euphemism on patients’ beliefs about the problem.Methods
A cross sectional survey followed by an experimental study was used with two conditions: the term ‘obese’ versus the GPs’ preferred euphemism. In the cross sectional survey, GPs’ (n = 19) described their preferred use of term. In the experimental study, patients (n = 449) from one General Practice in West London then completed a set of ratings about their beliefs following a vignette using either the term ‘obese’ or the GPs’ preferred euphemism.Results
The first stage of the study showed that GPs avoided using the term ‘obese’ and preferred to use a euphemism. The most commonly used euphemism was ‘your weight may be damaging your health’. The second stage showed that the term ‘obese’ made patients believe that the problem had more serious consequences and made them feel more anxious and upset than when the same symptoms were labelled using the euphemism. When analysed according to the patient's own BMI, however, the results showed that the term ‘obese’ had a greater emotional impact than the euphemism only on patients who were not obese; obese patients found the euphemism more upsetting.Conclusion
GPs avoid using the term ‘obese’ for fear of upsetting patients. This term, whilst making the problem appear more serious is only more upsetting for non-obese patients.Practice implications
GPs choice of term therefore needs to reflect whether they want the patients to be upset or whether they want them to accept the seriousness of their problem. 相似文献11.
Julia C.M. van Weert Sifra Bolle Sandra van Dulmen Jesse Jansen 《Patient education and counseling》2013
Objective
To evaluate what information and communication aspects older cancer patients (≥65) consider important in preparing for chemotherapy treatment (CT), the extent to which this corresponds with what oncology nurses consider important, and the extent to which nurses attend to these aspects during real-life educational visits in oncology.Methods
The QUOTEchemo was used to have patients (n = 116) and nurses (n = 123) rate the importance of 66 aspects of patient education. Subsequently, the implementation of these 66 aspects during videotaped nursing visits (n = 155) with older cancer patients receiving CT for the first time was examined.Results
Older cancer patients attached most importance to ‘treatment-related information’, ‘rehabilitation information’, ‘affective communication’ and discussing ‘realistic expectations’. Nurses placed great importance to almost all aspects except to discussing ‘realistic expectations’. Discrepancies were found between expressed importance and the actual performance during the videotaped consultations, particularly in discussing realistic expectations, coping information, interpersonal communication, and tailored communication.Conclusion
Results pointed to aspects that need improvement to ensure high quality patient education tailored to the patients’ needs.Practice implications
To make sure older cancer patients’ needs are met, more attention should be paid to the development of interventions supporting both needs assessment and fulfillment. 相似文献12.
Objective
Patient-centered goal setting, while central to contemporary rehabilitation, has been associated with growing uncertainty regarding its application in clinical practice. We aimed to examine the application of goal setting in inpatient stroke rehabilitation.Methods
Data collected from 44 participants (nine patients, seven family members, 28 health professionals), using multiple data sources (interviews, recorded clinical sessions, team meetings, participant-observation, and clinical documentation), were analyzed using constant comparative methods.Results
Certain goals (characterized by short timeframes, conservative estimation of outcomes, and physical function) were privileged over others. Involvement of patients and family in goal setting resulted in interactional dilemmas when their objectives, skills and perceived capacity did not align with privileged goals. When alignment did occur, greater patient involvement still did not appear to influence clinical reasoning.Conclusion
This study raises questions about how ‘patient-centered’ current goal setting practices are and whether a ‘patient-centered’ approach is even possible in inpatient stroke rehabilitation when considering predominant funding and health system models.Practice implications
For ‘patient-centered’ goal setting to be more than rhetorical, clinicians need to examine the values they attribute to certain types of goals, the influence of organizational drivers on goal selection, and how goals are actually used to influence clinical practice. 相似文献13.
14.
Neeraj K. Arora Kathryn E. Weaver Marla L. Clayman Ingrid Oakley-Girvan Arnold L. Potosky 《Patient education and counseling》2009
Objective
We evaluated pathways linking physicians’ decision-making style with cancer survivors’ health-related quality of life (HRQOL).Methods
We analyzed survey data from 623 survivors diagnosed with leukemia, colorectal, or bladder cancer in Northern California, 2–5 years prior to the study. Of these, 395 reported making a medical decision in the past 12 months and were asked about their physician's decision-making style. We evaluated the association of physician style with proximal communication outcomes (trust and participation self-efficacy), intermediate cognitive outcomes (perceived control and uncertainty), and distal health outcomes (physical and mental HRQOL).Results
Overall, 54% of survivors reported a sub-optimal decision-making style for their physician. With the exception of physical health, physician style was associated with all proximal, intermediate, and distal outcomes (p ≤ 0.01). We identified two significant pathways by which a participatory physician style may be associated with survivors’ mental health: (1) by increasing survivors’ participation self-efficacy and thereby enhancing their perceptions of personal control (p < 0.01); (2) by enhancing survivors’ level of trust and thereby reducing their perceptions of uncertainty (p < 0.05).Conclusion
A participatory physician style may improve survivors’ mental health by a complex two-step mechanism of improving survivors’ proximal communication and intermediate cognitive outcomes.Practice implications
Physicians who adopt a participatory decision-making style are likely to facilitate patient empowerment and enhance patients’ HRQOL. 相似文献15.
Claire E. Wakefield Donna Drew Sarah J. Ellis Emma L. Doolan Jordana K. McLoone Richard J. Cohn 《Patient education and counseling》2014
Objective
To determine the information needs and preferences of grandparents of children with cancer, to identify clinically useful predictors of high information need, and to develop the first validated scale to assess grandparents’ information needs regarding their grandchild's cancer.Methods
Grandparents of children with cancer completed a questionnaire, including a newly developed instrument to measure information needs.Results
Eighty-seven grandparents participated (mean age 65.02 years, range 46–81, 31% male). Grandparents’ information needs were high, especially among young and paternal grandparents. Grandparents’ greatest need was for information pertaining to their grandchild's chance of survival (81.6% reported “high need”), possible consequences of the child's cancer (81.6%), and phases of their treatment (72.4%). Ninety-three percent endorsed the development of a grandparents’ booklet, distributed at diagnosis and available online.Conclusions
Grandparents of children with cancer desire more information for their own reassurance, to reduce their reliance on ‘second-hand’ information from their grandchild's parents and to improve the support they provide their families. Grandparents strongly endorse the development of grandparent-targeted educational resources.Practice implications
Administration of this short, 15-item questionnaire can help staff identify the information needs of grandparents. Findings will inform the development of evidence-based resources for this important (but oft-neglected) population. 相似文献16.
Ring N Jepson R Hoskins G Wilson C Pinnock H Sheikh A Wyke S 《Patient education and counseling》2011,85(2):170-e143
Objective
To understand better what helps and/or hinders asthma action plan use from the professionals and patients/carers perspective.Methods
Systematic review and qualitative synthesis (using meta-ethnography).Results
Nineteen studies (20 papers) were included in an analysis of patients/carers’ and professionals’ views. Seven main influences on action plan implementation were identified including perceived un-helpfulness and irrelevance of the plans. Translation and synthesis of the original authors’ interpretations suggested that action plan promotion and use was influenced by professional and patient/carers’ asthma beliefs and attitudes and patient/carer experiences of managing asthma. Action plan use is hindered because professionals and patients/carers have different explanatory models of asthma, its management and their respective roles in the management process. Patients/carers, based on their experiential knowledge of their condition, perceive themselves as capable, effective in managing their asthma, but health professionals do not always share this view.Conclusion
Professionally provided medically focused action plans that do not ‘fit’ with and incorporate the patients’/carers’ views of asthma, and their management strategies, will continue to be under-utilised.Practice implications
Professionals need to develop a more patient-centred, partnership-based, approach to the joint development and review of action plans, recognising the experiential asthma knowledge of patients/carers. 相似文献17.
Objective
Venoplasty has been proposed, alongside the theory of chronic cerebrospinal venous insufficiency (CCSVI), as a treatment for multiple sclerosis (MS). Despite concerns about its efficacy and safety, thousands of patients have undergone the procedure. This paper analyses YouTube videos where patients have shared their treatment experiences.Methods
Content analysis on the 100 most viewed videos from over 4000 identified in a search for ‘CCSVI’, and qualitative thematic analysis on popular ‘channels’ demonstrating patients’ experiences.Results
Videos adopt an overwhelmingly positive stance towards CCSVI; many were uploaded by patients and present pre- and/or post-treatment experiences. Patients demonstrate rather than merely describe their symptoms, performing tests on themselves before and after treatment to quantify improvement. Videos combine medical terminology and tests with personal experiences of living with MS.Conclusion
Social media technologies provide patients with novel opportunities for advocating for particular treatments; generating alternative forms of ‘evidence’ built on a hybrid of personal experience and medical knowledge.Practice implications
Healthcare practitioners need to engage with new digital forms of content, including online social media. Instead of disregarding sources not considered ‘evidence-based’, practitioners should enhance their understanding of what ‘experiential-evidence’ is deemed significant to patients, particularly in contested areas of healthcare. 相似文献18.
Liesbeth van Vliet Anneke Francke Samanta Tomson Nicole Plum Elsken van der Wall Jozien Bensing 《Patient education and counseling》2013
Objective
To investigate how oncologists can balance explicit with general and realistic with hopeful information when discussing various topics at the transition from curative to palliative care in breast cancer.Methods
Qualitative analysis of focus groups consisting of female breast cancer survivors and healthy women.Results
Perceptions of survivors and healthy women largely overlapped. Participants thought that oncologists can help patients regain a future perspective during this consultation. To achieve this, four themes seemed important: honest medical information, availability of continued support, hope has many faces, and space to choose. Moreover, participants stressed they would need time to let the message sink in before any further information was provided.Conclusion
Participants thought that when confronted with this type of consultation they would need – more or less explicit – medical information and information regarding support. In order to maintain hope, knowledge about (treatment) possibilities is important, but also the certainty not to be abandoned by the hospital at a later stage of the disease and the confidence to remain able to make one's own decisions.Practice implications
A life-limiting diagnosis may shatter patients’ future perspective; however, this study provides suggestions for oncologists to create a new perspective. 相似文献19.
Objective
Cancer patients increasingly expect to be involved in treatment decision-making. We investigated factors that motivate cancer doctors to involve their patients in treatment decisions.Methods
We conducted 22 telephone interviews with doctors treating breast, colorectal, gynaecological, haematological or prostate/urological cancer. Interviews probed doctors for attitudes to shared decision-making (SDM), views of when patient involvement is appropriate and what motivated them to encourage involvement. Interviews were audio-recorded. Themes were identified using framework analysis.Results
Cancer doctors described disease, patient, doctor and societal influences on their support for patient involvement in treatment decisions. Treatment recommendations were described as ‘clear-cut’ or ‘grey’. When treatment options were clear-cut, the impact of treatment on patients’ quality of life and self-image and the influence of consumer groups motivated doctors’ support of patient involvement.Conclusion
Australian cancer doctors express differing support of patient involvement in decision-making dependent on context, impact and effect that involvement may have. Doctors described meeting patient involvement preferences as a challenge, and needing to identify different characteristics, anxiety levels and levels of understanding to guide them to involve patients in decisions.Practice implications
Models of shared decision-making may warrant refinement to better guide doctors to elicit and discuss information and involvement preferences. 相似文献20.
Margriet C. de Haan Thomas R. de Wijkerslooth Esther Stoop Patrick Bossuyt Paul Fockens Maarten Thomeer Ernst J. Kuipers Marie-Louise Essink-Bot Monique E. van Leerdam Evelien Dekker Jaap Stoker 《Patient education and counseling》2013