To describe the perspectives of Canadian women living with ovarian cancer regarding their experiences with the disease.
A cross-sectional survey of a convenience sample of Canadian women with ovarian cancer.
Survey questionnaires were sent to physicians in 26 cancer programs that treat women with ovarian cancer and to ovarian cancer self-help groups for subsequent distribution to women.
Women diagnosed with ovarian cancer and able to read English or French.
A variety of individual items in the survey related to information received, communication, physical and psychosocial symptoms, impact of illness and quality of life.
A total of 315 women returned the survey. The average age of the respondents is 59 years. Each province and territory is represented in the sample. Over one-half of the women received a diagnosis of ovarian cancer within a month of seeking help for a concern and 85% had multiple treatment modalities. The majority of the women felt adequately informed (80%) and were satisfied with communication with their physicians (mean of 4.1 to 4.5 on a 5-point scale). A majority (62%) said that their lifestyle had changed as a result of their disease. Problems were experienced most frequently regarding side effects (58%), fear of recurrence (54%), sleeping difficulties (46%), bowel difficulties (44%), fear of dying (36%) and difficulty concentrating (32%). Many who experienced problems reported receiving inadequate help for them (16% to 49%). Quality of life was reported as significantly lower following the diagnosis and treatment of ovarian cancer (p = 0.0001).
This study provides an important foundation for further investigation. There is a pressing need for research regarding the early identification of ovarian cancer and issues of support and coping. Care for women with ovarian cancer requires the expertise of a range of disciplines and community-based agencies working collaboratively as a team.
Despite the phenomenal growth during the past decade of cancer self-help groups for adult patients with cancer, little research has been conducted to document the interface between these groups and healthcare professionals, especially physicians. This study was initiated to provide information about family physician practices, awareness, and attitudes about self-help groups.
A survey questionnaire was mailed to a random sample of Ontario family physicians drawn from the College of Family Physicians of Canada's membership database.
A total of 911 completed questionnaires were returned, for a response rate of 64%. A majority (56.8%) of respondents were aware of at least one cancer self-help group in their region; 26.8% of these spoke frequently with their cancer patients about such groups. Most family physicians indicated that they were positively inclined toward cancer self-help groups, giving especially high ratings of helpfulness to sharing common experiences, overcoming isolation, feeling understood, and sharing information. Ratings of potential harm were low, with the most concern expressed about the possible provision of misinformation and the promotion of unconventional therapies. Responses to an open-ended question showed that many family physicians qualify their support for cancer self-help groups, depending on patient need, group composition, and leadership.
Family physicians and other members of the cancer care team should give increased attention to informing cancer patients about the potential benefits of self-help groups. Efforts need to be made to assist cancer self-help groups in developing informational brochures and to ensure that groups are listed in cancer resource directories. Educational initiatives about self-help groups would be useful for family physicians and other health professionals engaged in the care of cancer patients.
Members of self-help groups (SHGs) for support of cancer patients are concerned that physicians are skeptical about these groups and see them as potentially harmful. The purpose of this study was to assess family physicians' attitudes towards self-help groups and see whether these could be changed through an educational intervention.
A questionnaire assessing attitudes toward SHGs was mailed to 1,422 eligible Ontario family physicians, to which 911 responded (64% response rate). Responders were sent an educational package consisting of an article about self-help groups, a list of local cancer self-help groups, and a follow-up questionnaire.
The study was completed by 584/911 family physicians (64%). After being exposed to educational material, the physicians were more positive about the helpfulness of SHGs (p = 0.021), and less concerned about SHGs' being harmful (p = 0.003). They were more positive about the potential for SHGs to provide participants with opportunities for: sharing information (p = 0.004), bonding with other patients (p
The authors describe the experience of men with prostate cancer and their spouses in the early recovery period after surgery.
As part of a longitudinal qualitative study, semistructured interviews were held with 34 patients who had prostate cancer and their spouses 8 to 10 weeks after surgery.
Five components of experience emerged from the interviews: 1) hearing news about the extent of their cancer after surgery influenced how patients viewed their cancer experience and, in many cases, their recovery; 2) men placed great emphasis on recovering their physical capacity quickly; 3) couples connected with each other through working out care routines and managing periods of irritability; 4) couples described a range of responses to surgery side effects and complications; and 5) the meaning of cancer varied for couples, with most seeing the experience as a temporary disruption.
Physicians, nurses, social workers, and other health professionals working with patients before and after prostatectomies may assist couples to prepare better for the early recovery period by being both sensitive to the men's need to recover physical capacity quickly while helping them to understand that recovery takes time. Accurate information about expected periods of irritability, side effects, and possible complications would diminish the likelihood of distress during this period.
Comment In: Cancer Pract. 2000 Jul-Aug;8(4):15411898252
Persons with cancer are likely to encounter a loss of personal control as a result of their illness experience. An empowerment perspective, which emphasizes the possibility of patients "owning their own lives", is useful for understanding the interpersonal and social dynamics of patients' loss of control and for guiding the development of strategies aimed at maximizing control. Because the factors influencing an individual's sense of control are multi-leveled, optimal empowerment occurs when strategies are employed at several levels of social organization. In this paper, a number of barriers to the empowerment of cancer patients are identified and strategies recommended to enhance patient empowerment in cancer care. The empowerment needs and strategies discussed here include: (a) the provision of optimal care, (b) the enhancement of individual patient power, (c) the development of a strong consumer voice in policy decision-making processes, and (d) societal attitude change.
To describe the knowledge, practices and perspectives of Canadian family physicians regarding ovarian cancer.
A mailed survey questionnaire was followed by a reminder card, a second mailing of the questionnaire and a final reminder card.
A national sample of family physicians was drawn randomly from the membership database of the College of Family Physicians of Canada.
Knowledge related to ovarian cancer. Practices related to the screening and detection of ovarian cancer. Attitudes towards screening for ovarian cancer. Perceived role in the care of women at risk of, or diagnosed with, ovarian cancer. Perceived educational needs of physicians.
A total of 1079 completed questionnaires were returned, providing a response rate of 56.6%. Although most family physicians were aware of the basic facts about ovarian cancer, there were knowledge limitations related to risk factors, familial ovarian cancer syndromes and symptoms. Practices related to asymptomatic women were found to be mostly in accord with current guidelines and recognized the prevailing lack of evidence for the effectiveness of tests. Areas that were troublesome included the role of screening in high-risk women and knowledge about available tests. Most family physicians indicated that they have an important role to play in the care of women after they have been diagnosed with ovarian cancer. They also expressed a high level of interest in obtaining additional information related to ovarian cancer.
This study clearly shows that there is a need for additional research to assist with the development of evidence-based guidelines for women at increased risk of ovarian cancer and for women at no known risk. Pending more definitive evidence, interim guidelines could provide assistance to physicians currently having to make decisions in a context of massive uncertainty. Canadian family physicians would be interested in and would benefit from continuing medical education (CME) initiatives concerning ovarian cancer.
To document the perspectives, practices and knowledge of Canadian gynecologists regarding ovarian cancer.
A mailed survey questionnaire was followed by a reminder card and a second mailing of the questionnaire.
A sample of all gynecologists practising in Canada.
Knowledge related to ovarian cancer. Practices related to the screening and detection of ovarian cancer. Attitudes towards ovarian cancer. Perceived role in the care of women at risk of, or diagnosed with, ovarian cancer. Perceived educational needs of gynecologists regarding ovarian cancer.
A total of 504 completed questionnaires were returned, providing a response rate of 46%. Most gynecologists indicated that they knew the basic facts about ovarian cancer and risk factors. Practices related to asymptomatic, low-risk women were found to be mostly in accord with current guidelines and the lack of evidence for the effectiveness of tests. Practices regarding women with suspected early or late-stage ovarian cancer varied, particularly with regard to referral to gynecologic oncologists. Many respondents indicated that they have an important role to play in the care of women after they have been diagnosed with ovarian cancer or referred to another specialist. Respondents also expressed interest in obtaining additional information about ovarian cancer.
This study shows that there is a need for the development and dissemination of evidence-based guidelines regarding ovarian cancer. It also pinpoints areas where educational efforts could be directed.
Nine focus groups for well, longer-term survivors of breast cancer were held in Ontario, Canada. Prevalent themes identified through analysis of focus group transcripts fell into two broad categories, one reflecting the context within which women seek information and the other reflecting the content of information desired and sought. Themes related to context included: the ongoing impact on women of their initial disease experience and continued uncertainty about possible recurrence; womens' lack of information and understanding about processes involved in developing medical knowledge; prevailing mistrust about the impact of cost curtailment policies; and, concerns related to how professional communication can aid or hinder the goal of obtaining information. Themes related to content issues included: follow-up protocols, tamoxifen, detecting signs of possible recurrence, prevention for daughters, neglected side effects of treatment, insurance, lifestyle, and unconventional therapies.
Unconventional therapies have become increasingly popular with health care consumers in recent years. As patients seek information and attempt to make decisions about unconventional therapies, they often turn to nurses, asking their opinion about certain therapies. The nurse's attitudes and beliefs about unconventional therapies very likely will influence the response to the patient's inquiries. This work represents the findings of interviews with 48 nurses regarding their perspectives on unconventional therapies. Without exception, all nurses interviewed emphasized the need for information regarding unconventional therapies to be readily available for patients and health care professionals. The other themes identified in the interviews included the following: various people use unconventional therapies; people seek unconventional therapies for a variety of reasons; communication about unconventional therapies needs to be open; and conventional and unconventional practitioners ought to work collaboratively. The participants interviewed saw a clearly defined role for nurses regarding unconventional therapies.
In this paper I have described some of the recent developments in the growth of a patient/survivor movement in Canada. Arguments for the value of increased patient participation include providing a needed balance to the traditional medical perspective, addressing patient needs free from other vested interests, providing insights available only to cancer survivors, and facilitating empowerment. A number of current and potential difficulties related to increasing cancer survivor involvement have been raised, ranging from deliberate opposition from health administrators to disapproval from professionals of survivors' emotional expression to patient unwillingness. The greatest challenge is to move beyond token patient representation to substantive participation.