What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study

Objective To obtain feedback from patients receiving palliative care and their relatives from various ethnic backgrounds about their experiences of the disclosure process and their satisfaction with information sharing during the illness.Design A qualitative study with semistructured single interviews.Setting Perth, Western Australia, and Winnipeg, Manitoba, Canada.Participants 72 participants registered with palliative care: 21 patient-family dyads in Perth and 14 dyads and 2 patients in Winnipeg.Results Participants described their experiences in great detail. The analysis indicates that in information sharing the process is as important as the content. The timing, management, and delivery of information and perceived attitude of practitioners were critical to the process. This applied to information interactions at all stages of the illness. Main content areas mentioned related to prognosis and hope. Hope can be conveyed in different ways. Secondary information from various sources is accessed and synthesised with the primary information. All patients, regardless of origin, wanted information about their illness and wanted it fully shared with relatives. Almost all patients requested prognostic information, and all family members respected their wishes. Information was perceived as important for patient-family communication. Information needs of patient and family changed and diverged as illness progressed, and communication between them became less verbally explicit.Conclusions Information delivery for patients needs to be individualised with particular attention to process at all stages of illness. Patients and families use secondary sources of information to complement and verify information given by health carers.     

Information needs of cancer patients in west Scotland: cross sectional survey of patients' views.

OBJECTIVE: To assess the needs of patients with cancer for information about their condition. DESIGN: Cross sectional survey of patients'' views by means of semistructured interview with questionnaire. SETTING: A regional cancer centre and two university hospitals in west Scotland. SUBJECTS: 250 (93%) of 269 cancer patients invited to participate in study who were selected by age, sex, socioeconomic status, and tumour site to be representative of cancer patients in west Scotland. MAIN OUTCOME MEASURES: Patients'' need to know whether they had cancer, the medical name of their illness, progress through treatment, how treatment works, side effects, chances of cure, and treatment options. RESULTS: 79% (95% confidence interval 73% to 84%) of patients wanted as much information as possible, and 96% (93% to 98%) had a need or an absolute need to know if they had cancer. Most patients also wanted to know the chance of cure (91% (87% to 94%)) and about side effects of treatment (94% (90% to 97%)). When the replies were cross tabulated with patients'' age, sex, deprivation score, and type of treatment there was a linear trend for patients from more affluent areas to want more information and those from deprived areas to want less. There was a strong preference for diagnosis of cancer to be given by a hospital doctor (60% (53% to 66%). CONCLUSION: Almost all patients wanted to know their diagnosis, and most wanted to know about prognosis, treatment options, and side effects.     

Medicine and place: an inquiry

This essay explores the various places inhabited by doctors and patients, in order to lead doctors to a more complex understanding of their patients' experiences of illness. Using Adam Haslett's "The Good Doctor" (2002), we examine what happens when doctors enter the worlds of their patients, both the literal landscapes of their patients' homes and the hidden landscapes of their minds. We illustrate the impact place has on doctors' understanding of their patients and on the patients' attitudes toward their illness. In addition, we examine how place informs readers' perceptions of both the coherence and the divide between the worlds of doctor and patient.     

Coping with cancer through self-instruction: a hypothesis.

Because most cancer patients seem to cope well with the stresses of their illness, including the psychosocial ramifications, it is important to understand what good copers manage to do, as opposed to those patients who simply defend themselves against persistent problems. This requires making a radical distinction between coping and defending, as well as between healthy adaptive resources and latent pathological dispositions. A case report is presented to illustrate how one "supercoper" solved problems by self-instruction. While cognitive self-instruction may not be applicable for every cancer patient and all problems, it is a working hypothesis deserving of further investigation, since self-control and personal responsibility are essential elements in rehabilitation on all levels. One intervention model for "high distress" cancer patients is outlined.     

How the internet affects patients' experience of cancer: a qualitative study

Objective To explore how men and women with cancer talk about using the internet.Design Qualitative study using semistructured interviews collected by maximum variation sampling.Setting Respondents recruited throughout the United Kingdom during 2001-2.Participants 175 men and women aged 19-83 years, with one of five cancers (prostate, testicular, breast, cervical, or bowel) diagnosed since 1992 and selected to include different stages of treatment and follow up.Results Internet use, either directly or via friend or family, was widespread and reported by patients at all stages of cancer care, from early investigations to follow up after treatment. Patients used the internet to find second opinions, seek support and experiential information from other patients, interpret symptoms, seek information about tests and treatments, help interpret consultations, identify questions for doctors, make anonymous private inquiries, and raise awareness of the cancer. Patients also used it to check their doctors'' advice covertly and to develop an expertise in their cancer. This expertise, reflecting familiarity with computer technology and medical terms, enabled patients to present a new type of “social fitness.”Conclusion Cancer patients used the internet for a wide range of information and support needs, many of which are unlikely to be met through conventional health care. Serious illness often undermines people''s self image as a competent member of society. Cancer patients may use the internet to acquire expertise to display competence in the face of serious illness.     

More than skin deep: a self-consistency approach to the psychology of cosmetic surgery

Underlying attitudes about the general self and the specific body part operated on in cosmetic surgery were investigated. It was hypothesized that female cosmetic surgery patients would feel less favorably toward their noses, faces, or breasts than toward their overall self. These marked inconsistencies would cause "normal" individuals to seek practical solutions of enhancing the esteem of the particular body part, to make it consistent with their general view of themselves. Forty female cosmetic surgery patients were tested before and 2 and 4 months after surgery. In all, 12 hypotheses were made within the general self-consistency framework and 11 were upheld at levels ranging from 0.02 to 0.001. Self-consistency theory accurately represents the female cosmetic surgery patient as a normal woman in terms of self-esteem who is attempting to remediate a consciously felt inconsistency between general and specific body-part esteem. Cosmetic surgery seems to reduce this inconsistency.     

Information giving in clinical trials: the views of medical researchers

It is both an ethical and a legal requirement that patients who participate in clinical trials must generally give their consent. As part of this process, patients must be provided with adequate information to enable them to decide whether or not to take part. In the UK, the pharmaceutical companies that sponsor such research, as well as Local Research Ethics Committees, specify in detail the information that must be given to trial participants. The researchers who conduct clinical trials inevitably form views on the amount of information they are required to provide, and about patients' comprehension of that information. The literature in this area suggests that some medical researchers may be unhappy with the amount of information that they must give patient participants. There have been, however, few systematic attempts to determine their views. This paper reports a study that explored researchers' views as to (i) the amount of information provided to trial participants, and (ii) participants' understanding of that information. Researchers generally felt that they were required to give trial participants an appropriate amount of information, and that most patients had at least a reasonable understanding of key aspects of the clinical trials' process. However, there were differing views as to the level of information that they felt patients themselves wanted. The researchers did not generally feel that the patients' inability to comprehend information rendered the process of obtaining 'informed consent' a waste of time. However, some did believe that they were required to burden patients with excessive information.     

Professional and personal attitudes about access and confidentiality in the genetic testing of children: a pilot study

The ability to perform predictive genetic testing of children raises ethical concerns regarding whether and when to test and the disclosure of results. Semi-structured interviews with a convenience sample of pediatricians (12) and geneticists (13) were conducted to see how they would react to parental requests for predictive genetic testing of their children, and their attitudes about testing their own children. We also asked about disclosure attitudes and practices for their patients' relatives and within their own families. Respondents would provide predictive genetic testing for most conditions, yet were less likely to seek this information about their own children. Respondents believed it was very important for patients to share some types of genetic information with relatives, and were directive in their counseling about intrafamilial disclosure, especially within their own families. Although respondents would almost never breach patient confidentiality, many would breach confidentiality within their own families. Health care professionals distinguish between their professional and personal roles with regard to issues of access and confidentiality in predictive testing of children. They are willing to provide greater access and more confidentiality for their patients than within their own families.     

Recruiting medical groups for research: relationships, reputation, requirements, rewards, reciprocity, resolution, and respect

Background

In order to conduct good implementation science research, it will be necessary to recruit and obtain good cooperation and comprehensive information from complete medical practice organizations. The goal of this paper is to report an effective example of such a recruitment effort for a study of the organizational aspects of depression care quality.

Methods

There were 41 medical groups in the Minnesota region that were eligible for participation in the study because they had sufficient numbers of patients with depression. We documented the steps required to both recruit their participation in this study and obtain their completion of two questionnaire surveys and two telephone interviews.

Results

All 41 medical groups agreed to participate and consented to our use of confidential data about their care quality. In addition, all 82 medical directors and quality improvement coordinators completed the necessary questionnaires and interviews. The key factors explaining this success can be summarized as the seven R's: Relationships, Reputation, Requirements, Rewards, Reciprocity, Resolution, and Respect.

Conclusion

While all studies will not have all of these factors in such good alignment, attention to them may be important to other efforts to add to our knowledge of implementation science.     

Patients' Receipt and Understanding of Written Information about a Resucitation Policy

Aims: To assess patient receipt of written information. To ensure patients understand the written information about a resuscitation policy and to determine whether they disapproved of or had concerns about the policy.
Methods: All admissions to four wards of the hospital were approached for an interview. A set questionnaire was asked by one of 2 interviewers.
Results: 72% of 572 admissions were interviewed. Refusal accounted for only 2 of the people not interviewed. 11% were unable to advocate for themselves by reason of mental incompetence, inability to communicate or impairment secondary to their illness.
Of the 401 interviewed only 49% recalled receiving the patient information booklet. Few patients (17%) recalled reading the information in the patient information booklet. They were all then given the paragraph about the hospital's resuscitation policy. 352 were asked their understanding and only 61% demonstrated that they understood the paragraph. 91% of all 401 patients approved of the hospital having the option of DNR orders. 31% of people however had concerns related to DNR orders. These are discussed.
Conclusions: Many acutely unwell patients are unable to advocate for themselves. Written information is a poor method of communicating with patients. There was limited receipt of the information and many misunderstood the paragraph about the hospitals resuscitation policy. There was a wide range of patient thoughts and concerns expressed.     

Canadian outpatients and advance directives: poor knowledge and little experience but positive attitudes.

OBJECTIVE: To examine the knowledge of, previous experience with, attitudes toward and perceived barriers to completing advance directives among outpatients at two general medicine clinics. DESIGN: Cross-sectional questionnaire administered in face-to-face structured interviews. SETTING: General internal-medicine outpatient clinics at a university teaching hospital. PATIENTS: One hundred and five adult outpatients who could communicate in spoken English and who consented to be interviewed. RESULTS: Of 167 patients approached, 58 were excluded because they could not communicate in spoken English, and 4 refused to participate. Of the remaining 105 patients, 17 (16%) knew about living wills, 12 (11%) about durable powers of attorney for health care and 4 (4%) about advance directives. Twenty-three (22%) had thought about their preferences for life-sustaining treatment, 20 (19%) had discussed them, none had written them down, and 45 (43%) had thought about choosing a proxy. Sixty-one (58%) wanted to think about their preferences for treatment, 65 (62%) wanted to discuss them, 32 (30%) wanted to write them down, and 80 (76%) wanted to choose a proxy. The perceived barriers to completing an advance directive were inability to write, the belief that an advance directive was unnecessary, a fatalistic attitude, previous discussion of preferences, a desire to leave the decision to doctors, uncertainty about preferences, a desire to discuss preferences rather than document them, a desire to wait until the situation arose, a desire to write down preferences in the future and a desire to avoid thinking about preferences or advance directives. Respondents with more knowledge of life-sustaining treatments were more likely to want to complete an advance directive. CONCLUSIONS: Outpatients have positive attitudes toward advance directives, but their knowledge and experience are limited. These data underscore the need for patient education and for policies to eliminate the barriers to completing advance directives that patients face.     

Frustrations in benchmarking IRBs: reflections after analyzing the United States' IRB registration database

Like any organization committed to quality, institutional review boards (IRBs) desire to benchmark themselves with their colleagues. In order to do so, there is a need for high-quality, well-validated, and well-populated datasets designed for this purpose. Unlike other areas of healthcare, there are no such aggregated databases of IRB information. Analyzing the largest repository of IRB information--the United States' IRB registration database consisting of approximately 4,500 IRBs--yields some useful results, but given that this database was designed as a registry and not for benchmarking, its use is limited to benchmarking the most basic demographics. If members of the IRB community want to benchmark themselves relative to their colleagues, they will have to look at how other healthcare operations have successfully done it (through private and/or government efforts) and invest the time and resources required to obtain meaningful data.     

Knowledge, Attitudes, and Practices of Physicians in Tomsk Oblast Tuberculosis Services Regarding Alcohol Use Among Tuberculosis Patients in Tomsk, Russia

In recent years, the Russian Federation has seen a dramatic rise in morbidity and mortality from tuberculosis (TB), attributed in part to an increase in alcohol use disorders (AUDs), which are associated with worse TB treatment outcomes. This study describes the knowledge, attitudes and practices of physicians who treat TB patients in Tomsk, Russia. We conducted semistructured interviews with 16 TB physicians and 1 addiction specialist. Interviews were audiorecorded, transcribed, translated and systematically analyzed. We identified four key domains: definitions of alcohol use and abuse and physicians’ knowledge, attitudes and practices regarding these problems. Physicians described patients as largely precontemplative and reluctant to seek treatment. Physicians recognized their limited knowledge in diagnosing and treating AUDs but expressed interest in acquiring these skills. Few options are currently available for treatment of AUDs in TB patients in Tomsk. These findings suggest that Tomsk physicians are aware of the need to engage AUDs in TB patients but identify a knowledge gap that restricts their ability to do so. Training TB physicians to use simple screening instruments and deliver evidence-based alcohol interventions improves TB outcomes among patients with co-occurring AUDs.     

Parents' difficulties and information needs in coping with acute illness in preschool children: a qualitative study.

OBJECTIVES: To identify and explore difficulties parents experience with acute illness in young children and the information they seek to help them. DESIGN: Qualitative study using semi-structured one t one and group interviews with parents of preschool children. SETTING: Disadvantaged inner city community. SUBJECTS: 95 parents of preschool children. RESULTS: Parents felt disempowered when dealing with acute illness in their children because of difficulties making sense of the illness. Central to parents'' difficulties were their experiences of inadequate information sharing by their general practitioners and variations in their doctors'' decisions and behaviour. Disparity between parents'' beliefs and expectations about illness and treatment and professionals'' behaviour further frustrated parents'' attempts to understand illness. Parents expressed a need for a range of accessible and specific information to support them through their negotiation of children''s illness. CONCLUSIONS: Communication with parents requires greater recognition of parents'' difficulties. Professionals have considerable potential to empower parents by sharing more information and skills. Such information should be consistent and address parents'' concerns, beliefs, and expressed needs if this potential is to be realised.     

Stigmatization in the long-term treatment of psychotic disorders

Stigma is linked to negative prejudices without examining whether there is any justification for such behaviour. Over time, various efforts have been made to reduce prejudice toward people with mental illness. Yet, the World Health Organization (WHO) World Health Report still describes stigma as one of the greatest obstacles to the treatment of mental illness. While schizophrenia, among other mental illnesses, is the most stigmatized even to the point that some want the name of the illness to be hidden or changed, patients with bipolar illness may also be exposed to stigma. The degree of stigmatization has been found to be positively associated with the severity of the mental disorder, and stigma is carried out not only by patients but also by their families in correlation with the severity. Tragically, people with mental illness themselves are as negative in their opinions about mental illness as is the general public, and concerns about stigma adversely affect self-esteem and adaptive social functioning. There are many programmes worldwide for the fight against stigmatization, and there is clear recognition of the fact that stigma can only be successfully eliminated if the programme becomes a normal part of health service rather than of campaigns of limited duration.     

Women's need for information before attending genetic counselling for familial breast or ovarian cancer: a questionnaire,interview, and observational study.

OBJECTIVES: To describe women''s information needs prior to genetic counselling for familial breast or ovarian cancer. DESIGN: Prospective study including semistructured telephone interviews before genetic counselling, observations of consultations, completion of postal questionnaires, and face-to face interviews within two months of counselling. SUBJECTS: 46 women attending genetic counselling for familial breast or ovarian cancer. MAIN OUTCOME MEASURES: Subjects'' understanding of process and content of genetic counselling before attending and attitudes about their preparation for the counselling session. RESULTS: Although all women interviewed before the clinic expected to discuss their risk of developing cancer and risk management options, there was evidence of a lack of knowledge about the process and content of genetic counselling, 17 (37%) women said they did not know what else would happen. Most women interviewed after counselling viewed it positively, but 26 (65%) felt they had been inadequately prepared and 11 (28%) felt that their lack of preparation meant that they could not be given an accurate estimation of their risk of cancer. CONCLUSIONS: Some women felt that they did not obtain optimum benefit from genetic counselling because they were inadequately prepared for it. We suggest that cancer family history clinics should provide women with written information about the process and content of genetic counselling before their clinic attendance.     

Bulimia nervosa,binge eating,and psychogenic vomiting: a controlled treatment study and long term outcome.

An "epidemic" prevalence of binge eating and vomiting (bulimia nervosa) has been reported, and treatment has been claimed to be difficult. This paper describes a short term outpatient treatment programme of eclectic orientation capable of being conducted by non-specialist staff, under medical supervision, in local centres. The treatment programme was evaluated in a controlled trial and in long term follow up. In 30 women with severe bulimia the treatment programme significantly reduced their incidence of dietary manipulation without producing weight gain, weight disorder, or neurotic illness. After treatment all the women had fewer symptoms; 24 stopped binge eating and vomiting at the end of treatment, and a further four stopped shortly afterwards. During formal follow up 20 showed no dietary abuse and a further eight reduced their attacks to an average of three episodes a year: all judged treatment to be a success. Pretreatment indicators of poorer prognosis include alcohol abuse and a history of anorexia nervosa. Married patients experienced marital difficulties or illness in the spouse.     

"Post-residency disease" and the medical self: identity, work, and health care among doctors who become patients

Doctors who become patients due to serious illnesses face many challenges related to issues of identity, work, and professionalism. In-depth interviews with such doctors reveal the complex ways in which illness threatens identity in these professionals. In comparison with "medical student's disease," these doctors now exhibit "post-residency disease"-minimizing physical symptoms that are in fact present, leading to decreases in care sought. Doctors often feel they are somehow invulnerable to disease and have to remain strong, not burdening others. Many describe themselves as "workaholics," which can prove to be a double-edged sword, posing problems as well as providing benefits. This professional commitment could interfere with preventive health behaviors and with "practicing what they preach." Some view their illness with their "medical self" - as if they were a physician observing another patient rather than themselves. These doctors often support their approach by choosing a colleague as a doctor who will not challenge them, thereby establishing a "denial system" as opposed to a support system. These doctor-patients confront difficult issues of how much their physicianhood is an identity or an activity, illustrating the intricate relationships and tensions between work, identity, professionalism, and health in contemporary medicine.     

Knowledge and acceptability of pap smears, self-sampling and HPV vaccination among adult women in Kenya

Objectives

Our study aimed to assess adult women’s knowledge of human papillomavirus (HPV) and cervical cancer, and characterize their attitudes towards potential screening and prevention strategies.

Methods

Women were participants of an HIV-discordant couples cohort in Nairobi, Kenya. An interviewer-administered questionnaire was used to obtain information on sociodemographic status, and sexual and medical history at baseline and on knowledge and attitudes towards Pap smears, self-sampling, and HPV vaccination at study exit.

Results

Only 14% of the 409 women (67% HIV-positive; median age 29 years) had ever had a Pap smear prior to study enrollment and very few women had ever heard of HPV (18%). Although most women knew that Pap smears detect cervical cancer (69%), very few knew that routine Pap screening is the main way to prevent ICC (18%). Most women reported a high level of cultural acceptability for Pap smear screening and a low level of physical discomfort during Pap smear collection. In addition, over 80% of women reported that they would feel comfortable using a self-sampling device (82%) and would prefer at-home sample collection (84%). Nearly all women (94%) reported willingness to be vaccinated to prevent cervical cancer if offered at no or low cost.

Conclusions

These findings highlight the need to educate women on routine use of Pap smears in the prevention of cervical cancer and demonstrate that vaccination and self-sampling would be acceptable modalities for cervical cancer prevention and screening.