Feasibility of a rural palliative supportive service.

INTRODUCTION: Healthcare models for the delivery of palliative care to rural populations encounter common challenges: service gaps, the cost of the service in relation to the population, sustainability, and difficulty in demonstrating improvements in outcomes. Although it is widely agreed that a community capacity-building approach to rural palliative care is essential, how that approach can be achieved, evaluated and sustained remains in question. The purpose of this community-based research project is to test the feasibility and identify potential outcomes of implementing a rural palliative supportive service (RPaSS) for older adults living with life-limiting chronic illness and their family caregiver in the community. This paper reports on the feasibility aspects of the study. METHODS: RPaSS is being conducted in two co-located rural communities with populations of approximately 10 000 and no specialized palliative services. Participants living with life-limiting chronic illness and their family caregivers are visited bi-weekly in the home by a nurse coordinator who facilitates symptom management, teaching, referrals, psychosocial and spiritual support, advance care planning, community support for practical tasks, and telephone-based support for individuals who must commute outside of the rural community for care. Mixed-method collection strategies are used to collect data on visit patterns; healthcare utilization; family caregiver needs; and participant needs, functional performance and quality of life. RESULTS: A community-based advisory committee worked with the investigative team over a 1-year period to plan RPaSS, negotiating the best fit between research methods and the needs of the community. Recruitment took longer than anticipated with service capacity being reached at 8 months. Estimated service capacity of one nurse coordinator, based on bi-weekly visits, is 25 participants and their family caregivers. A total of 393 in-person visits and 53 telephone visits were conducted between January 2013 and May 2014. Scheduled in-person visit duration showed a mean of 67 minutes. During this same time period only 19 scheduled visits were declined, and there was no study attrition except through death, indicating a high degree of acceptability of the intervention. The primary needs that were addressed during these visits have been related to chronic disease management, and the attending physical symptoms were addressed through teaching and support. The use of structured quality of life and family caregiver needs assessments has been useful in facilitating communication, although some participants experienced the nature of the questions as too personal in the early stages of the relationship with the nurse coordinator. CONCLUSIONS: Findings from this study illustrate the feasibility of providing home-based services for rural older adults living with life-limiting chronic illness. The RPaSS model has the potential to smooth transitions and enhance quality of life along the disease trajectory and across locations of care by providing a consistent source of support and education. This type of continuity has the potential to foster the patient- and family-centered approach to care that is the ideal of a palliative approach. Further, the use of a rural community capacity-building approach may contribute to sustainability, which is a particularly important part of rural health service delivery.

Identifying mental health services in clinical genetic settings.

The purpose of this study was to examine the mental health needs of individuals at risk for adult onset hereditary disorder (AOHD) from the perspective of their genetic service providers, as it is unknown to what extent psychosocial services are required and being met. A mail-out survey was sent to 281 providers on the membership lists of the Canadian Association of Genetic Counsellors and the Canadian College of Medical Geneticists. The survey assessed psychosocial issues that were most commonly observed by geneticists, genetic counsellors (GCs), and nurses as well as availability and types of psychosocial services offered. Of the 129 respondents, half of genetic service providers reported observing signs of depression and anxiety, while 44% noted patients' concerns regarding relationships with family and friends. In terms of providing counselling to patients, as the level of psychological risk increased, confidence in dealing with these issues decreased. In addition, significantly more GCs reported that further training in psychosocial issues would be most beneficial to them if resources were available. As a feature of patient care, it is recommended that gene-based predictive testing include an integrative model of psychosocial services as well as training for genetic service providers in specific areas of AOHD mental health.

An ethnography of low-income mothers' safeguarding efforts.

PROBLEM: Children living in lower-income environments are at greater risk for unintentional injuries. However, little is known about the safety practices of mothers living in low-income situations. METHOD: This ethnographic study explored the child safeguarding experiences of low-income mothers using in-home interviews and observations. RESULTS: Mothers' safeguarding efforts included cognitive and emotional work, child directed work, and work directed at the physical and social environments. Factors that influenced the women's safeguarding included the quality of the indoor space, availability of safe play space, traffic hazards, sibling interactions, child care supports, relationships with neighbors, and trust in community services. DISCUSSION: These findings have implications for the conceptualization of safeguarding practices and provide insight about the experiences of mothers living on low-incomes. IMPACT ON INDUSTRY: When developing safety interventions, program planners should consider the views and practices of mothers as well as contextual factors in the physical and social environments.

Analyzing participant produced photographs from an ethnographic study of fatherhood and smoking.

As part of an ongoing ethnographic study, we examined the photographs and narratives that new fathers produced to ascertain how they created social, psychological, and relational space for continued smoking. A four-part process for analyzing the photographs consisting of preview, review, cross-photo comparison, and theorizing revealed how visual data analyses can be used to develop insights into men's health behaviors and beliefs. There is ongoing epistemological debate and methodological uncertainty about how photographic data should be treated in health sciences research. By conducting formal layered analyses, researchers can expand and extend both what is said about, and interpreted through, photographs.

Beliefs related to breast health practices: the perceptions of South Asian women living in Canada.

Breast cancer is becoming a major concern for many South Asian women. Clinical observations of women from a South Asian community living in Canada revealed an under use of early detection strategies. The purpose of this qualitative ethnoscience study was to examine breast health practices from the perspective of South Asian women to provide a foundation for the development of culturally suitable breast health services for this group. Open-ended interviews were conducted with a convenience sample of 50 South Asian women over the age of 30 who had not been diagnosed with breast cancer. Adequate representation of the main religious groups (i.e. Sikh, Hindu, Muslim and Christian) was ensured through sampling techniques. Analysis of translated interviews involved identification of themes and the development of a taxonomy to represent relationships among emerging cultural themes and domains. Four central domains of beliefs related to breast health practices were identified: beliefs about a woman's calling, beliefs about cancer, beliefs about taking care of your breasts and beliefs about accessing services. These beliefs hold important implications for how health promotion strategies should be structured and offered, In particular, attention must be paid to the language that is used to talk about breast cancer, the importance of the role of the family in women's health decisions and traditions related to using narratives to share information and advice.

Decision making related to complementary therapies: a process of regaining control.

The process by which women with breast cancer make decisions related to using complementary therapies was investigated using grounded theory. Open-ended interviews were conducted with 16 women receiving orthodox treatment from across the breast cancer trajectory and who used a wide range of complementary therapies. Constant comparative analysis revealed that decision making regarding complementary therapies involved three interconnected sequential phases: (1) Getting something in place: covering all the bases, (2) hand-picking complementary therapies that fit: getting a personalized regimen in place and (3) living with the security of complementary therapies: fine-tuning a regimen to live with. Factors that influenced the decision-making process, both positively and negatively, were identified. Decision making related to the use of complementary therapies was perceived as a means of regaining control during experiences of uncertainty associated with breast cancer; the outcome of which was the maintenance of hope. Implications for supporting women's decision-making efforts regarding complementary therapies are presented.

Communicating cancer risk information: the challenges of uncertainty.

Developments in predictive testing for inherited cancers have focused attention on the accurate and sensitive communication of risk information. Although sharing risk information is often equated with genetic testing, it is important to acknowledge that the need for risk information related to familial cancer is also relevant to those not eligible for, or interested in, testing. Communicating cancer risk information is germane to a number of health professions including physicians, geneticists, genetic counsellors, psychologists, nurses, health educators and social workers. Based on a literature review of 75 research reports, expert opinion papers and clinical protocols, we provide a synthesis of what is known about the communication of cancer risk information and make recommendations for the enhancement of knowledge and practice in the field.

South Asian womens' views on the causes of breast cancer: images and explanations.

Using ethnoscience methods, interviews with 50 South Asian women living in Western Canada were conducted and analyzed to explore explanations and images of breast cancer. Embedded in the women's stories of breast cancer were distinctive, often vivid and fear-provoking images of abnormal growth. Explanations about the causes of breast cancer involved five domains of belief. The first domain was of a physical nature and centred on damage to the breast. A second domain of explanations, 'can catch it,' focused on the way this disease could be spread to others. Other women attributed breast cancer to the ways women could 'bring it upon yourself,' often linking a negative lifestyle with the development of cancer. Many women attributed cancer to being 'in the hands of others,' explaining the cancer was caused by careless words, curses or divine power. Finally, breast cancer was seen as something that could be passed down in the family. The taxonomy developed in this study provides a useful framework for understanding the explanations that might underlie women's health-seeking behaviours and for developing culturally suitable counseling strategies.

Twelve-month follow-up of a smoking relapse prevention intervention for postpartum women.

This study examined the long-term effectiveness of a postpartum smoking relapse prevention intervention by evaluating the smoking status and smoking cessation self-efficacy of original study participants at 12 months following delivery. Two hundred and thirty-eight women who had participated in a randomized clinical trial, a nurse-delivered relapse prevention intervention, were visited in their homes. Data were collected on smoking status, self-efficacy, mental health, alcohol use, breast feeding, social support, smoking in the social environment, and sociodemographics. Smoking status was verified with measures of carbon monoxide in expired air. The 12-month continuous smoking abstinence rate was 21.0% in the treatment group and 18.5% in the control group; odds ratio (OR) = 1.17, 95% confidence interval (CI) = 0.62-2.22. One half (50.4%) of the control group and 41.2% of the treatment group reported smoking daily at 12 months; OR = 1.45, 95% CI = 0.87-2.43. The treatment group attained higher self-efficacy. Four variables were associated with relapse to daily smoking; breast feeding and mental health had protective effects, while partners who smoked and greater amount smoked prior to pregnancy had adverse effects.

Facilitating day-to-day decision making in palliative care.

As part of a larger grounded theory study investigating the process by which palliative care patients make everyday choices, a secondary analysis of data was conducted to investigate the ways nurses support or restrict patients' participation in their care. Constant comparative methods were used to generate a detailed, contextually grounded description of nurses' strategies that influenced patients' participation in making everyday choices about their personal and nursing care. Data consisted of field notes derived from observations of patients and their caregivers in two hospital-based palliative care units and from 23 transcripts of interviews with participating nurses and patients. Nurses' efforts to support patients' participation in decision making were described as a four-phase process: getting to know the patient, enhancing opportunities for choice, being open to patient choice, and respecting choice. Factors influencing nurses' use of supportive behaviors and behaviors that restricted patients' participation in everyday choices were identified. Given the importance patients attributed to making choices, these findings provide a foundation for the design of nursing interventions that hold great potential for directly influencing quality of life.

The use and meaning of touch in caring for patients with cancer.

Although touch and touching are complex phenomena that constitute an important aspect of nursing practice, the ways in which nurses use touch are still poorly understood. In this study, patterns of nurse-patient touch were examined by analyzing videotapes of nurses caring for patients with cancer and audiotapes of unstructured interviews with patients and selected nurses. Using the techniques of qualitative ethology, five types of touch were identified and described: comforting, connecting, working, orienting, and social. These types of touch are comparable to the two major kinds of nurse-patient touch previously identified in the literature: task-related touch and affective touch. However, detailed, qualitative descriptions of the five types of touch, the variations in associated verbal and nonverbal behaviors, and the associated meanings provide more comprehensive descriptions than previously have been available. In particular, the use of connecting, orienting, and social touch have not been well-recognized or described in the literature. Awareness of the types and meanings of touch affords nurses the opportunity to increase the therapeutic value of touch as a nursing intervention.

Patterns of breastfeeding and work: the Canadian experience.

Monthly semi-structured interviews were conducted with 61 mothers who intended to continue breastfeeding after they returned to work. Thirty-six mothers successfully combined breastfeeding and work for a mean of 18.05 weeks. Characteristics of their employment and five strategies used to facilitate the transition from breastfeeding on demand to acquiring a new pattern of breastfeeding to manage lactation in the workplace are described. Revised definitions for patterns of mixed feeding and recommendations for research and practice are included.

Urban-rural differences in the health-promoting behaviours of Albertans.

Few investigators have examined whether the behaviours undertaken to promote health differ with respect to geographic location. On the basis of data from a telephone survey of a probability sample of 853 Albertans, respondents were divided into groups according to residence in one of four geographic locations: large cities, small cities, towns, or rural settings, including villages and farms. When the confounding effects of sex, age, income and education were controlled for, those living in rural settings, compared with those living in large cities, were found to engage in healthier behaviours, including sleeping seven or more hours a day, eating three meals a day, and avoiding the excessive consumption of alcohol. A significantly greater proportion of individuals in geographic locations other than large cities reported that they frequently consumed fried and fatty foods. Although no geographic differences were noted in smoking, more town and rural dwellers placed smoking cessation as a priority for health improvement.

Striving for balance: palliative care patients' experiences of making everyday choices.

A fundamental principle of palliative care is the provision of patient-centred care, an approach explicitly based on the patient's perspective. Although much attention has been given to determining patients' preferences for involvement in medical decisions, choices related to personal and nursing care routines have been largely ignored in the literature. Data from participant observations of nurse-patient interactions involving 16 palliative care patients and their nurses as well as 10 in-depth open-ended interviews with patients were analyzed using grounded theory methods. Although the choices made by patients appeared uncomplicated on the surface, the context of unfamiliarity, uncertainty, and unpredictability in palliative care increased the underlying complexity of decision making. Through a process of deliberation and trade-offs, patients attempted to regain or maintain some balance in their lives. This process of striving for balance consisted of three overlapping phases: weighing things up, communicating choice, and living with one's choices.

Intending to breastfeed and work.

Many women who return to the work force during the first year following the births of their infants plan to combine breastfeeding and work; yet little is known about the process of preparing for the transition from breastfeeding in the home to continuing to breastfeed while employed. A study was conducted to explore mothers' decision-making processes during this transition. Interviews were conducted with 61 urban Canadian mothers who intended to continue breastfeeding after returning to work. Participants revealed that, although they intended to continue breastfeeding, whether or not they actually did depended on many factors that were beyond their control. These mothers had to play it by ear. They made elaborate plans, as well as back-up plans, allowing for all possible eventualities.

Mothers' perceptions of breast milk.

In-depth interviews were conducted with nine breastfeeding mothers to examine their attitudes related to breast milk. Participants revealed that variations in the quantity of milk produced were closely monitored and that some mothers were concerned about changes in the quality of their milk. Differences in perceptions of factors that influence quality and quantity of milk production are described. Changes in a variety of interventions aimed at supporting and maintaining breastfeeding are suggested in light of these findings.

An observational study of the development of a nurse-patient relationship.

The purpose of this exploratory descriptive case study was to identify features of nurse-patient interactions (NPI) in the development of a nurse-patient relationship (NPR). Observations of interactions in a cancer treatment unit included 60 videotaped, sequential, naturally occurring NPIs involving one dyad over a 3-day period. A microanalysis of the interactions was conducted using qualitative ethological methods. The analysis focused on identifying important recurring behavioral clusters and characteristic patterns of behavior that comprised these clusters. Important features of NPIs in the development of an NPR were identified and described in detail. The active and complementary roles of both participants in this process and the contribution of social exchange, trust, and humor are highlighted. The findings illustrate the importance of continuity of nursing care if NPRs are to be used to their fullest extent to address complex patient care needs.

Nursing: a practical science of caring.

Knowledge development related to caring is examined from the epistemological perspective of nursing as a practical science. Four stages of knowledge development for a practical science of caring are proposed and then used as a basis for evaluating efforts to develop a body of knowledge related to caring. Issues that need to be addressed to facilitate the advancement of nursing as a practical science of caring are identified.

The use of ethology in clinical nursing research.

Although the pragmatic implications for observational research in nursing are profound, these techniques are underused. In this article the methods of ethology, or the systematic detailed study of behavior, and its application to clinical nursing research are described. The authors suggest that ethology may be used to explore behavior in cognitively impaired, elderly patients, psychiatric patients, and infants. The authors also suggest that ethology is suited for examining subconscious or transitory phenomena, such as pain responses, that are unsuited to self-report methods.

Concepts of caring and caring as a concept.

If caring is to be retained as the "essence" of nursing, and if research in this area is to advance, then the various perspectives of caring must be clarified, the strengths and the limitations of these conceptualizations examined, and the applicability of caring as a concept and theory to the practice of nursing identified. Examination of the concept of caring resulted in the identification of five epistemological perspectives: caring as a human state, caring as a moral imperative or ideal, caring as an affect, caring as an interpersonal relationship, and caring as a nursing intervention. Two outcomes of caring were identified: caring as the subjective experience and as the physiologic responses in patients. The authors concluded that knowledge development related to caring in nursing is limited by the lack of refinement of caring theory, the lack of definitions of caring attributes, the neglect to examine caring from the dialectic perspective, and the focus of theorists and researchers on the nurse to the exclusion of the patient.