Information and support needs of women with primary relatives with breast cancer: development of the Information and Support Needs Questionnaire.

AIMS OF THE STUDY: The aim was to develop and pilot test a newly developed measure, The Information and Support Needs Questionnaire (ISNQ), for use with women with primary relatives with breast cancer. BACKGROUND/RATIONALE: Breast cancer is a major risk to the health of women in the United Kingdom (UK). Increasingly, research is documenting women's needs for information and support, particularly at the time of diagnosis. However, to date there is little understanding of the information and support needs of women who have a family history of breast cancer. Contributing to the dearth of understanding of female relatives' needs is the lack of valid and reliable instruments for use in descriptive and intervention research with this population. DESIGN/METHODS: The ISNQ and survey items documenting family history, sources of information and support for breast cancer risk, breast self-care practices, and other variables were pilot tested for the acceptability of the measures, appropriateness of the data collection methods, initial psychometric properties of the ISNQ, and time and financial costs of administration. Data were collected from 39 women living in the North-west of England who had primary relatives with breast cancer using mailed questionnaires and follow-up telephone interviews. FINDINGS: The items on the ISNQ were reported to be clear, acceptable to women and to yield relevant data. The psychometric properties of the new measure were satisfactory with a high reliability coefficient alpha. Descriptive findings indicate that women had moderate to high needs for information and support, but reported that these needs were not well met. CONCLUSIONS: The results of this pilot are guiding the development of a larger study in which the information and support needs of women with a family history of breast cancer are explored.

Late adolescent female smoking.

Although there have been intense efforts to reduce the prevalence of cigarette smoking in the past three decades, smoking continues to be a critical public health problem. An area of particular concern is the increasing number of young women who are smoking. Gender specific research usually does not examine factors affecting smoking behaviours. Information on late adolescent female smoking is not readily found in the literature. The aims of this study were to explore the smoking patterns and processes of late adolescent females and to explore factors which may or may not be helpful in assisting them to stop smoking. A qualitative ethnographic approach was used to uncover the perceptions of 25 adolescent girls of their behaviour. Data were collected using tape-recorded semi-structured interviews and a questionnaire. Items for the questionnaire were derived from the Manitoba Youth Smoking Survey and from the Fagerstrorn Nicotine Tolerance Scale. Qualitative analysis resulted in four stories about smoking: the start story, the smoking story, the quit story, and the looking to the future story. Although many of the findings are congruent with the existing literature, much of the data reflected the purposive nature of smoking in late adolescent girls. Study findings support the need for holistic approaches to health promotion to ameliorate factors affecting smoking behaviour.

Perceptions of the role of the school in providing information and support to adolescent children of women with breast cancer.

Little is known about the needs of adolescents of women with breast cancer. The purpose of this study was to describe the perceptions of adolescents (ages 12-20) about the role of the school in assisting them in dealing with the cancer experience. An exploratory, qualitative study was done to elicit detailed descriptions of adolescent's needs for information and support in response to their mother's breast cancer. A convenience sample of 31 adolescents of women in five illness phases participated in semi-structured interviews. In addition, two focus group interviews were conducted. Interviews were tape-recorded, transcribed and analysed using content analysis techniques. Findings specific to the adolescents' perceptions of the role of the school were discussed according to content, type, amount, timing, provider and quality of information. Support needs were discussed as type of support, source of support, amount, timing and focus. Although school personnel attempted to be supportive and adolescents received generic information about cancer, overall the needs of the adolescents were not adequately addressed. Recommendations for schools and health services in assisting adolescents to cope with this major life experience are made.

Students' knowledge of and attitudes towards primary health care.

The aims of this study were to assess nursing students' knowledge of and attitudes towards primary health care using a newly developed Canadian instrument, the Primary Health Care Questionnaire (PHCQ). The instrument was refined for use in the UK prior to collecting data from 427 students in degree, Project 2000, health visitor and district nursing courses. Findings indicate that students in all programmes surveyed have been exposed to the concepts of primary health care. Students have acquired knowledge about primary health care and, generally, positive attitudes to the concepts. Significant differences were found between several student groups on both the knowledge and attitude measures. Although further psychometric evaluation of this new measure is recommended, the PHCQ shows promise as a valuable measure for use in assessing the move toward an increased emphasis on primary health care concepts in nursing education.

The changing environment of community health practice and education: perceptions of staff nurses, administrators, and educators.

Historically, baccalaureate nursing programs in Canada have prepared graduates to practice in the community. Two recent trends-the move to prepare all registered nurses in degree programs and the changing climate in which community nursing is practiced-made it timely to explore the educational preparation required for community health practice. This article reports on one part of the study, i.e., on findings that explicate the nature of community health nursing practice in a western Canadian province, as it has changed during the past decade, as it is currently practiced, and as it is expected to develop in the future. What, in other words, is the nature of the community practice for which nursing students should be prepared? An action research design guided the study. Participants were recruited from all major urban, rural, and northern settings in which baccalaureate nurses practice throughout the province. The perspective of relevant people was considered important, i.e., nurses practicing in the community, administrators, and educators of future community nurses. One hundred eighteen (118) participants were interviewed in 27 focus groups. Data were tape recorded, transcribed, and analyzed for content. Among the themes identified were those that captured changes community health nurses experienced in their nursing practice. Nurses also described how they thought practice would evolve in the years to come. These themes are discussed within a primary health care framework in which nurses can be expected to play a more active role in shaping community health nursing practice.

Development and testing of the Primary Health Care Questionnaire (PHCQ): results with students and faculty in diploma and degree nursing programs.

Primary health care (PHC) has been proposed as a key strategy for improving the health of the world community, and nurses are acknowledged as key health-care professionals in meeting this goal. Efforts to have nurses implement PHC policies presuppose that they are knowledgeable about this approach to health care and have positive attitudes. The underlying aim of this study was to develop a measure of knowledge, attitudes, and practices in PHC and to assess the reliability and validity of the measure with a sample of student nurses and faculty in degree and diploma programs. The Primary Health Care Questionnaire (PHCQ) is a three-part self-report measure that provides quantitative data on knowledge and attitudes and qualitative data on practices of PHC. The instrument was developed from a rigorous review of the literature and systematic feedback from two panels (local and national) expert in PHC. Data were collected from 457 students and faculty in one four-year degree program (three sites), one post-diploma degree program, and three diploma programs, in a western Canadian province. Internal consistency reliability estimates using Cronbach's alpha were .76 (knowledge) and .85 (attitudes). Test-retest reliability at two weeks was r = .67 (knowledge) and .76 (attitudes). Content validity was enhanced through a systematic review of the instrument by a two-phase local and a national expert panel. Findings indicated greater knowledge and more positive attitudes among senior compared to junior students, degree compared to diploma students, and faculty compared to students. These findings lend support to the validity of the measure. The qualitative data revealed that learning opportunities related to PHC were built into both the diploma and the degree program through classroom teaching, clinical practice, and written assignments.

Community development: theoretical and practical issues for community health nursing in Canada.

Despite the importance currently given to community development as an increasingly significant role for community nurses, there is little analysis of the role in the nursing literature. This paper provides background information on the historical origins of community development work through an extensive review of the literature. As well, four models of community development are synthesised from literature in sociology, social psychology, education and political science. These include economic development models, education models both formal and informal, confrontational models, and empowerment models. Each is discussed, and the relevance for community health nursing practice is critiqued. Finally, issues which may arise when community health nurses attempt to practice within a community development model are discussed. Issues are examined related to the structures of organizations in which nurses work, characteristics of nurses themselves, and the communities which nurses serve. The argument is advanced that despite the pitfalls and problems, this new role shows promise as an important mechanism for community health nurses to promote the community's health. However, much additional work will be needed to test out models for community development in actual practice. Evaluation of the role will also be important to determine the degree to which it can be implemented and the resultant health outcomes for the population.

Breast self-care practices in women with primary relatives with breast cancer.

Breast cancer is a major threat to the health of women; two-thirds of women diagnosed with breast cancer are likely to die from the disease. In North America one woman in nine will experience breast cancer at some point in her lifetime. In the United Kingdom, the figure is somewhat lower, one in 12, and increasing. Increasing age and a family history of breast cancer are considered major risk factors. With no known primary prevention, early detection measures remain the main hope of decreasing mortality. Despite controversy surrounding the effectiveness of breast self-examination in reducing mortality, breast self-examination or breast self-'awareness' are advocated by health departments and voluntary cancer organizations. In this paper, breast self-care practices of women with a family history of breast cancer are reported. A descriptive study using in-depth semi-structured interviews as the prime data collection procedure was conducted with 55 women who had mothers, sister(s) or mothers and another primary relative with breast cancer. All interviews were tape recorded, transcribed and analysed using latent content analysis and constant comparison techniques. The findings revealed that women constructed their own personal meanings about the benefits and limitations of breast self-examination and their use of this self-care behaviour within their daily lives. Women used breast self-examination as a means of gaining control over their feelings of the threat of breast cancer. Women's earlier involvement with their relative during the cancer experience and their own processing of their personal risk for breast cancer influenced their breast self-care practices.

Searching for health needs: the work of health visiting.

Searching out health needs and stimulating clients' awareness of health needs are two key principles of health visiting practice. However, there is little empirically based knowledge of how health visitors carry out these functions in their daily work. The purpose of this paper is to describe and analyse health visitors' work in searching for health needs and promoting clients' awareness and actions in response to professionally identified needs. Forty-five health visitors were interviewed by means of semi-structured, conversational interviews. Findings identified that searching for health needs occurred in four types of situations. These were needs that were (a) client initiated, (b) easily seen, (c) 'opened up' by the health visitor, and (d) suspected and hidden. Several processes were involved in searching for needs and stimulating clients' awareness and actions, including: questioning, using illustrations from other client situations, normalizing, assigning homework, assessing and intervening while searching, and responding to cues. Timing played an important part in when and how interventions to search out needs occurred. This study contributes to our understanding of how health visitors work in the community to promote individual and family health.

Giving and receiving: an empirically derived theory on health visiting practice.

The aim of this study was to uncover how experienced health visitors conceptualize and evaluate their health visiting work. The grounded theory approach to data collection and analysis was used to develop a beginning midrange substantive theory about health visiting practice. The beginning theory provides an explanation and understanding of how health visitors work with clients in the community during their day-to-day visiting practice. Data were gathered from 45 experienced health visitors from 13 health authorities in the north-west of England by means of the conversational interview. The basic psychosocial problem uncovered in the data was health visitors' need to provide a service and clients' need to fulfil personal needs and goals. The unifying theme of giving and receiving integrated the major categories into the key analytic framework in this study. This key psychosocial process was the pattern of interaction between health visitors and clients, in which both parties control the interactions by regulating what they offer and accept from each other. Each party both selectively 'gives' and 'receives' in order to manage the health visitor-client encounters. What gets offered and how the offer is received and acted on is a complex process involving many factors related to the health visitor, the client, and the context in which the interaction takes place.

Working with men: an analysis of health visiting practice in families with young children.

The purpose of this paper is to explore health visitors' work with men as uncovered in their detailed descriptions of actual cases. The study used the grounded theory approach to data collection and analysis. Forty-five health visitors were interviewed using the conversational interview and 111 cases of their work with young families discussed. Findings indicate that health visitors' work with men was influenced by both their conceptualization of men within family-focused health visiting practice and contextual factors in the actual client-health visitor situation which enhanced or restricted interventions with men. Four approaches to working with men were identified and classified as: (1) high conceptualization and high intervention, (ii) high conceptualization and low intervention, (iii) low conceptualization and high intervention, and (iv) low conceptualization and low intervention. This paper contributes to our understanding of the health visitor's role in family health promotion.

Preventive work with families: issues facing public health nurses.

This paper examines the issues that nurses experience when entering the family system to work preventively. The theoretical basis of family-centered nursing is analysed and the need for empirical work is identified in order to develop a knowledge base for this practice. Some unique characteristics of the public health nursing role are discussed with emphasis on territorial issues, power relationships and accountability problems. The need for public health nurses to function as advanced generalists across different system levels is recommended and family skills necessary for effective family nursing are examined. The authors identify the unique role of public health nurses because they have access to healthy families and families dealing with early stages of health concerns. The authors support the general structure of public health practice as of value for preventive work with families. However, clarity regarding referrals, contracting and the rights of clients is called for to facilitate collaborative family-centred nursing.

The development of the health visitor-client relationship.

The aim of this paper is to explore the health visitor-client relationship as it emerged in an indepth qualitative study of health visiting practice. Despite the emphasis in health visiting practice on developing relationships with clients, there is little empirically based knowledge as to how health visitors develop relationships with clients and what effect relationships have on clients' health outcomes. Forty-five experienced health visitors were interviewed and asked to discuss cases where they felt they had had a positive effect and cases where they thought they had not had any impact. The interviews were tape-recorded and later transcribed. A detailed analysis of the processes involved in developing relationships is described. The data from this study suggest that health visitors develop relationships with clients in an attempt, not only to provide services to clients, but also to ensure access to clients over time. This study makes a contribution to our understanding of the processes involved in everyday health visiting practice.

Gaining access to clients: the case of health visiting.

The aim of this paper is to explore the concept of gaining access to clients as it emerged from an in-depth qualitative study of health visiting practice. The study was conducted using a grounded theory approach to data collection and analysis. Forty-five experienced health visitors were interviewed using a semi-structured interview guide. The interviews were tape recorded and later transcribed. A detailed analysis of the processes involved in 'entering' into client situations to begin health visiting work is presented. Entry into the client/family situation is a process which involves both obtaining access to the client in the environment where health visitor and client meet and 'entering' into the client situation more fully to continue the health visiting work. The data from this study would suggest that the work involved in entering client situations involves many strategies to ensure entry and re-entry. This process is influenced by many factors within the client, the health visitor, and the health visitor-client encounter. This paper makes a contribution to our understanding of the processes involved in everyday health visiting practice.

Nursing education in Canada: historical 'progress'--contemporary issues.

Contemporary concerns in nursing education in Canada suggest that the earlier educational pathways have not always represented progress. The persistence of alternate routes for the preparation of registered nurses, and the continuing divisiveness among nurses with differing educational backgrounds are problem areas that still require resolution. Some problems, such as the development of the nursing curriculum, have been shared across educational settings. Nurse educators in Canada, as in other countries, have vested tremendous energy into this aspect of nursing education. In retrospect, it is recognized that much of this effort has been misdirected. Efforts to strengthen the theoretical underpinnings of the curriculum have resulted in the incorporation of borrowed theory from other disciplines, often without critical examination of the context in which the theory developed, or of its consistency with the philosophical perspectives of nursing. Attempts to build curricula around the major nursing models have also met with limited success. Separation of education and practice, persistence of multiple levels of preparation in nursing, and a continual search for viable curriculum models have led to uncertainty, to detours in the development of nursing education, and to occasional reconsideration of previous approaches.

The referral process in health visiting.

The aim of this paper is to explore the concept of referral as it emerged from an in-depth qualitative study of health visiting practice. The study was conducted using a grounded theory approach to data collection and analysis (Glaser and Strauss, 1967). Forty-five experienced health visitors were interviewed using a semi-structured interview guide. The interviews were tape recorded and later transcribed. A detailed analysis is presented of the processes involved in referring. This includes working up the client for referral, working up the agency, third party referrals, and issues of control in the referral process. The outcome of referral in terms of the effect on the client is also discussed. This paper makes a contribution to our understanding of the microprocesses in everyday health visiting practice.