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.

Stakeholder perspectives on transitions of nursing home residents to hospital emergency departments and back in two Canadian provinces.

Major gaps exist in our understanding of transitions in care for older persons living in nursing homes. The purpose of the study was to identify key elements, from multiple stakeholder perspectives, that influence the success of transitions experienced by nursing home residents when they required transfer to a hospital emergency department. This interpretive descriptive study was conducted in two cities in the Canadian provinces of British Columbia and Alberta. Data were collected from 71 participants via focus groups and individual interviews with nursing home residents, family members, and professional healthcare providers working in nursing homes, emergency departments, and emergency medical services. Transcripts were analyzed using constant comparison. The elements contributing to the success of transitions reflected a patient- and family-centered approach to care. Transitions were influenced by the complex interplay of multiple elements that included: knowing the resident; critical geriatric knowledge and skilled assessment; positive relationships; effective communication; and timeliness. When one or more of the elements was absent or compromised, the success of the transition was also compromised. There was consistency about the importance of all the identified elements across all stakeholder groups whether they are residents, family members, or health professionals in nursing homes, emergency departments or emergency medical services. Aspects of many of these elements are modifiable and suggest viable targets for interventions aimed at improving the success of transitions for this vulnerable population.

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.

Managing genetic discrimination: strategies used by individuals found to have the Huntington disease mutation.

The introduction of predictive testing for Huntington disease (HD) over 20 years ago has led to the advent of a new group of individuals found to have the HD mutation that are currently asymptomatic, yet destined in all likelihood to become affected at some point in the future. Genetic discrimination, a social risk associated with predictive testing, is the differential treatment of individuals based on genotypic difference rather than physical characteristics. While evidence for genetic discrimination exists, little is known about how individuals found to have the HD mutation cope with the potential for or experiences of genetic discrimination. The purpose of this study was to explore how individuals found to have the HD mutation manage the risk and experience of genetic discrimination. Semi-structured individual interviews were conducted with 37 individuals who were found to have the HD mutation and analysed using grounded theory methods. The findings suggest four main strategies: "keeping low", minimizing, pre-empting and confronting genetic discrimination. Strategies varied depending on individuals' level of engagement with genetic discrimination and the nature of the experience (actual experience of genetic discrimination or concern for its potential). This exploratory framework may explain the variation in approaches and reactions to genetic discrimination among individuals living with an increased risk for HD and may offer insight for persons at risk for other late-onset genetic diseases to cope with genetic discrimination.

Cervical cancer screening in ethnocultural groups: case studies in women-centered care.

INTRODUCTION: The purpose of this study was to identify and describe critical elements of women-centered care within the context of providing cervical screening to three ethnocultural groups in Canada: Asian, South Asian and First Nations. METHODS: Data for this collective case study included open-ended interviews with purposive samples of women and key informants from each target group. Following thematic analysis, cross-case analysis was completed by comparing and contrasting issues and contextual factors influencing women's and providers' experiences. RESULTS: Cervical screening services for each group were shaped by attention to ethnocultural values, women's desire for thorough explanations, and the importance of a comfortable setting. While participation rates varied across clinics, women were positive about their experiences in obtaining cervical screening. Some women's expectations that they could address a range of health concerns with female health providers at the clinics were stymied by structural barriers that prevented staff from addressing issues beyond those directly related to cervical screening. Cross-case analysis revealed three key elements of women-centered care: respectful and culturally appropriate interactions between women and health providers, the importance of providing acceptable alternatives for women, and the need for comprehensive health services. CONCLUSION: While the establishment of Pap test clinics for ethnocultural groups has the potential to enhance participation in cervical screening, changes in health policy and the structure of health services are required for existing programs to fully implement the elements of women-centered health care identified in this study. Other models of providing health care to women in ethnocultural groups, including the use of clinics staffed by nurse practitioners, should be evaluated.

A meta-analysis of mammography screening promotion.

The purpose of this study was to identify factors that influence the effectiveness of interventions in increasing women's use of mammography screening programs. To this end, we conducted a systematic literature review of studies published between 1966 and 1997. In this review, we recorded data about the year and country in which studies were completed, the study design, the methods for measuring screening rates, various sample characteristics, the nature of the intervention, and the resulting screening rates. The PRECEDE model was used as a framework to make distinctions between the various interventions. To synthesize evidence about the baseline screening rates and the effect of interventions on the incidence of mammography screening, we fit random-effects logistic regression models. These models revealed that more recent studies (those conducted from 1990 to 1996) were associated with higher screening rates (odds ratio [OR], 2.1; 95% confidence interval [CI], 1.2-3.9). Conversely, those designed to target older women (minimum age, 50-65 years) and those set in clinics exhibited smaller screening rates (OR, 0.6, 95% CI, 0.3-1.0, and OR, 0.5; 95% CI, 0.3-0.8, respectively). The meta-analyses also suggested methodologic issues that must be considered before the relative strength of various interventions can be assessed rigorously.

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.

The desi ways: traditional health practices of South Asian women in Canada.

Although many South Asian immigrants have made their homes in Canada, little research has examined health behaviors in this population and fewer studies have examined the use of traditional health practices. As part of a larger study on health-seeking patterns of South Asian women living in Western Canada, an analysis was done on the use of traditional health practices. Using critical ethnographic methods, data were collected through face-to-face individual interviews (n = 50), focus group discussions (n = 12), and community meetings with a cross section of women in the South Asian community. Interviews were conducted in the language of each participant's choice. Thematic analysis was done on the transcribed interviews. Women's descriptions of traditional health practices varied and consisted of home remedies, dietary regimens, prayers, rituals, and consultation with hakims, veds, babajis, pundits, homeopaths, and jyotshis. Choosing to use traditional health practices was influenced by family members, the nature and severity of problems, beliefs and prior experiences, and the feasibility of using these practices. Traditional health practices were used on a daily or episodic basis. Women rarely used traditional health practices exclusively. Traditional health practices were used for small problems or when conventional medicines did not work. For women to meet their health needs, health care providers must be culturally sensitive and respect women's choices to use traditional health practices.

Falling through the cracks. Women's experiences of ineligibility for genetic testing for risk of breast cancer.

OBJECTIVE: To describe experiences of women seeking information about their risk of hereditary breast cancer who fail to meet strict eligibility criteria for genetic counseling and testing. DESIGN: Qualitative descriptive study. SETTING: Hereditary cancer program in western Canada. PARTICIPANTS: Women who had received notification of their ineligibility for referral for hereditary breast cancer risk assessment (n = 20) and some of their referring physicians (n = 10). Of 28 attempted contacts, five women had moved, one declined the invitation to participate, and two could not be interviewed because of scheduling conflicts. Ten of 20 physicians declined the invitation to participate. METHOD: In-depth, open-ended telephone interviews were conducted. Transcribed interviews were systematically analyzed to identify salient themes. MAIN FINDINGS: Three themes emerged. The first theme, "It's always on your mind," points to the profound concern about breast cancer that underlies women's experiences in seeking genetic testing. The second theme, "A test is a test," reflects women's beliefs that the test was relatively simple and similar to other medical tests in that it would provide a definitive answer. The third theme, "Falling through the cracks," captures the experience of ineligibility. Women reacted with a range of emotional responses and were left frustrated in their search for more specific information about their personal risk for breast cancer. Although women were encouraged to contact their physicians, few did. CONCLUSION: These findings point to the psychological consequences in women who seek genetic testing for risk of breast cancer when they are told they are ineligible and they are not given adequate information and support.

Narratives of smoking relapse: the stories of postpartum women.

Many women who stop smoking during pregnancy relapse soon after the birth of their infants. Using narrative research, experiences of smoking relapse were explored using interviews with 27 postpartum women. The stories of relapse were analyzed to identify important components, paying attention to commonalities, differences, and areas of emphasis. Five general story lines were identified: (1) controlling one's smoking (starting with a "puff" and consciously restricting the amount smoked); (2) being vulnerable to smoking(relapsing because of an inability to resist cigarettes); (3) nostalgia for one's former self(relapsing to recapture feelings of freedom and happier times); (4) smoking for relief(relapsing to manage emotions and stress); and (5) never really having quit (relapsing because they did not quit for themselves). The findings of this study provide support for the claim that the experiences of smoking cessation and relapse among postpartum women may be unique and, consequently, may require specialized intervention.

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.

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.

Preventing smoking relapse in postpartum women.

BACKGROUND: Although many women quit smoking during pregnancy, the majority resume smoking shortly after giving birth. OBJECTIVES: To test a program to prevent smoking relapse in the postpartum period by comparing the rates of continuous smoking abstinence, daily smoking, and smoking cessation self-efficacy in treatment and control groups. METHODS: In a randomized clinical trial, nurses provided face-to-face, in-hospital counseling sessions at birth, followed by telephone counseling. The target population included women who quit smoking during pregnancy and who gave birth at one of five hospitals. The 254 participating women were interviewed 6 months after delivery and assessed biochemically to determine smoking status. RESULTS: The 6-month continuous smoking abstinence rate was 38% in the treatment group and 27% in the control group (odds ratio [OR] = 1.63, 95% confidence interval [CI] .96 - 2.78). Significantly more control (48%) than treatment (34%) group participants reported smoking daily (OR = 1.80, 95% CI = 1.08 - 2.99). Smoking cessation self-efficacy did not vary significantly between the groups. CONCLUSIONS: Smoking cessation interventions focusing on the prenatal period have failed to achieve long-term abstinence. Interventions can be strengthened if they are extended into the postpartum period.

Smoking relapse and early weaning among postpartum women: is there an association?

BACKGROUND: Smoking in the postpartum period may contribute to early weaning, although the nature and temporal aspect of the relationship are poorly understood. The objective of this study was to examine the association between early weaning and smoking relapse among women who stopped smoking during pregnancy. METHODS: A secondary analysis of data from a randomized controlled trial was conducted. The participants were 228 women who had stopped smoking for pregnancy, who participated in a smoking relapse prevention trial, and who breastfed. Women who relapsed to daily smoking postpartum were compared with those who remained abstinent or smoked occasionally. The dependent variable was breastfeeding for less than 26 weeks (early weaning). Potential covariates included intended duration of breastfeeding, parity, partner's smoking, nicotine dependence, emotional health, return to paid employment, and various sociodemographic variables. RESULTS: Approximately two-thirds (65.1%) of the women who relapsed to daily smoking weaned before 26 weeks compared with 33.8 percent of the women who remained abstinent or smoked occasionally. Controlling for intended duration of breastfeeding, education, and return to paid employment, women who resumed daily smoking were almost four times more likely to wean early than those who abstained or smoked occasionally. CONCLUSIONS: Early weaning may result from psychological or physiological changes associated with tobacco use. Smoking relapse prevention in the postpartum period may be one of the most effective interventions in ensuring that women who stop smoking for pregnancy remain stopped and breastfeed their babies for the recommended duration.

Breast health practices and South Asian women.

Breast cancer is an important women's health issue in all communities. To detect breast cancer early, all women should practise monthly breast self-examination, have regular clinical breast examinations and attend mammography screening at suggested intervals. Participation in these breast health practices is influenced by a wide variety of factors, including how women define health and health practices, priorities in women's lives and their explanations of the causes of diseases such as cancer.

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.