To delineate the role of the oncology patient navigator, drawing from the experiences and descriptions of younger women with breast cancer.
Interpretive, descriptive, qualitative research design.
Participants' homes, researcher's home, and via telephone, all in Winnipeg, Manitoba, Canada.
12 women aged 50 years or younger who were diagnosed with breast cancer within the last three years.
Face-to-face semistructured interviews explored patient experiences with the cancer care system, including problems encountered, unmet needs, and opinions about the functions of the patient navigator role. The audio-recorded interviews were transcribed and data were broken down and inductively coded into four categories. Constant comparative techniques also were used during analysis.
The role of the oncology patient navigator included two facets: "Processual facets," with the subthemes assigned to me at diagnosis, managing the connection, mapping the process, practical support, and quarterbacking my entire journey; and "Personal qualities: The essentials," with the subthemes empathetic care tenor, knowing the cancer system, and understanding the medical side of breast cancer.
Despite the tremendous effort directed toward enhancing care for younger women undergoing treatment for breast cancer, gaps continue to exist. Younger women with breast cancer require a care approach providing ongoing dialogue, teaching, and emotional support from the point of diagnosis through treatment, including transitions of care within the oncology setting and back to their primary care practitioner.
Oncology nurse navigators are well positioned to provide patients with anticipatory guidance from diagnosis to the end of treatment.
Comment In: Oncol Nurs Forum. 2014 Jan 1;41(1):89-9124368242
Little empirical work has been conducted assessing the perspectives of nurses regarding the barriers, facilitators, and strategies associated with achieving quality patient care at the end of life. A grounded theory study was conducted examining nursing behaviours and social processes inherent in the provision of quality end-of-life care from the perspective of generalist nurses (n = 10) working in an acute care setting. An inductively derived preliminary model, "creating a haven for safe passage", was developed based on the findings from this study and has been published elsewhere (1). This article provides a detailed description of one of the subprocesses of the model regarding the transition from curative to palliative care--the subprocess of "facilitating and maintaining a lane change". The various strategies which nurses used to effect a lane change, as well as the facilitators and barriers they encountered in this process, are presented. The consequences associated with both successful and unsuccessful lane changes are reported.
This paper is a report of our secondary analysis of patient and family caregiver prospective control in lung cancer.
Control beliefs underlie self-care in sickness and health. Self-care often involves 'shared' activities between the afflicted individual and caregiving family and friends. However, depending on how control is perceived, conflicts can occur in decision-making thus jeopardizing optimal self-care. We need to comprehend how control beliefs compare between patients and caregivers and how their control beliefs are linked with dealing with serious illness.
Based on questionnaire data collected in our larger study between September 2005 and February 2009, we conducted exploratory comparative analyses of 304 patients' and caregivers' control beliefs in managing lung cancer. Eight 5-point response items captured prospective control. Exploratory factor analysis with promax rotation was conducted to compare dyadic perceptions on the dimensionality of prospective control. We also conducted exploratory correlations between control beliefs and smoking cessation, attributional reactions, caregiver helping and symptom reports.
Principal component analysis identified the same factors for patients and caregivers: factor 1, Fate control and factor 2, Team control. Patient and caregiver 'Fate' and 'Team' control sub-scales were respectively associated with hope, caregiver helping and patient smoking cessation.
Clinicians need to support, adapt or develop a philosophy of cancer care that is inclusive of partnerships, drawing on beliefs of patients and caregivers that controlling lung cancer is a team effort which in turn is tentatively linked to patient smoking cessation, positive emotions and caregiver helping.
The purpose of this study was to assess the feasibility of dignity therapy for the frail elderly.
Participants were recruited from personal care units contained within a large rehabilitation and long-term care facility in Winnipeg, Manitoba. Two groups of participants were identified; residents who were cognitively able to directly take part in dignity therapy, and residents who, because of cognitive impairment, required that family member(s) take part in dignity therapy on their behalf. Qualitative and quantitative methods were applied in determining responses to dignity therapy from direct participants, proxy participants, and healthcare providers (HCPs).
Twelve cognitively intact residents completed dignity therapy; 11 cognitively impaired residents were represented in the study by way of family member proxies. The majority of cognitively intact residents found dignity therapy to be helpful; the majority of proxy participants indicated that dignity therapy would be helpful to them and their families. In both groups, HCPs reported the benefits of dignity therapy in terms of changing the way they perceived the resident, teaching them things about the resident they did not previously know; the vast majority indicated that they would recommend it for other residents and their families.
This study introduces evidence that dignity therapy has a role to play among the frail elderly. It also suggests that whether residents take part directly or by way of family proxies, the acquired benefits--and the effects on healthcare staff--make this area one meriting further study.
To examine whether primary caregivers' helping behaviors are predicted by their illness attribution reactions as proposed in Weiner's model.
Latent-variable structural equation modeling.
Five oncology outpatient settings in central Canada.
100 dyads consisting of patients with lung cancer and their primary caregivers.
Self-report questionnaires, abstracted medical record data, confirmatory factor analysis, and structural equation modeling.
Smoking history, judgments of responsibility for controlling the disease, anger, pride, and helping behaviors.
An interrelation was seen between judgments of responsibility toward patients to control aspects of the disease, affective reactions of anger and pride, and helping behavior. Anger and pride had a stronger influence on helping behavior than smoking history did.
Judgments of responsibility for controlling lung cancer and anger toward patients put caregivers at risk for dysfunctional helping behavior, particularly if patients had a history of tobacco use.
Primary caregivers' affective states directly affect their helping behavior toward patients with lung cancer. Clinicians should be aware that caregivers who perceive the patient to be largely responsible for managing the disease also may be angry toward that patient. Angry caregivers are at risk of providing suboptimal helping behavior.
As part of a larger online survey examining the practices and preferences of Canadian critical care nurses regarding family presence during resuscitation (FPDR) of adult family members, the purpose of the study was to explicate salient issues about the practice of FPDR identified by nurses who responded to the qualitative portion of the survey.
As part of an online survey, participants were given the opportunity to provide qualitative comments about their personal or professional experiences with FPDR. Data analysis was completed using content analysis and constant comparison techniques.
Of the 944 nurses contacted electronically, 450 completed the survey, for a response rate of 48%. Of these, 242 opted to share qualitative comments regarding their experiences with FPDR. Four major themes emerged from the data: (a) perceived benefits for family members; (b) perceived risks for family members; (c) perceived benefits for healthcare providers; and (d) perceived risks for healthcare providers.
The practice of FPDR impacts both family members and members of the resuscitation team. Nurses weigh these impacts when considering whether or not to bring family members to the bedside.
The results of this study provide information for practicing clinicians, educators, and administrators regarding the decision-making processes nurses use when considerations of bringing family members to the bedside during resuscitative events are evoked.
We recently completed a grounded theory study examining nutritional care experiences in advanced cancer from the perspective of patients (n=13), families (n=23), and health care providers (n=11) (1). That work generated important information about adult family members' perceptions and behaviour regarding the nutritional care their terminally ill adult relative received while hospitalized on an inpatient palliative care unit. An overview of the inductively derived model that emerged from that work has been reported elsewhere (2). This article provides a more detailed description of one of the major sub-processes of the model regarding family member responses to declining oral intake and weight loss in a terminally ill relative-the sub-process of "fighting back: it's best to eat." The strategies family members use when fighting back, and the consequences of these strategies for patients, family members, and health care providers are reported. Implications for practice and research are provided.
As part of a larger study examining end-of-life care in nursing homes, qualitative focus groups were conducted with bereaved family members to explicate those factors contributing to satisfaction and dissatisfaction with end-of-life care in the nursing home setting. Content analysis of focus group data revealed two overarching themes that influenced family members' satisfaction with care. These included: (a) ability of staff to recognize signs of imminent dying, and (b) communication and information sharing about the resident's status and plan of care. Family members dissatisfied with their relative's end-of-life care expressed feelings of guilt, anger, and frustration, both while the resident was alive and in the bereavement period. The findings of this study have implications for clinicians committed to delivering quality end-of-life care to residents and their families and provides the basis for educational interventions and quality care improvement initiatives in the long-term care setting.
Patients who are facing life-threatening and life-limiting cancer almost invariably experience psychological distress. Responding effectively requires therapeutic sensitivity and skill. In this study, we examined therapeutic effectiveness within the setting of cancer-related distress with the objective of understanding its constituent parts.
Seventy-eight experienced psychosocial oncology clinicians from 24 health care centers across Canada were invited to participate in 3 focus groups each. In total, 29 focus groups were held over 2 years, during which clinicians articulated the therapeutic factors deemed most helpful in mitigating patient psychosocial distress. The content of each focus group was summarized into major themes and was reviewed with participants to confirm their accuracy. Upon completion of the focus groups, workshops were held in various centers, eliciting participant feedback on an empirical model of therapeutic effectiveness based on the qualitative analysis of focus group data.
Three primary, interrelated therapeutic domains emerged from the data, forming a model of optimal therapeutic effectiveness: 1) personal growth and self-care (domain A), 2) therapeutic approaches (domain B), and 3) creation of a safe space (domain C). Areas of domain overlap were identified and labeled accordingly: domain AB, therapeutic humility; domain BC, therapeutic pacing; and domain AC, therapeutic presence.
This empirical model provides detailed insights regarding the elements and pedagogy of effective communication and psychosocial care for patients who are experiencing cancer-related distress.
Chronic heart failure is associated with debilitating symptoms, diminished quality of life and frequent hospitalizations. The literature suggests that effective everyday self-care decision-making can improve heart failure outcomes. This article focuses on the qualitative portion of a study of self-care decision-making in community-dwelling individuals attending a heart failure clinic. Semi-structured interviews conducted with 11 participants identified influences that enhance or impede self-care practices and their behavioural responses to them. Content analysis was used to examine predisposing attributes and enabling circumstances described in Connelly's Model of Self-Care in Chronic Illness. These interactive factors were either facilitators or barriers to self-care. The importance of individualizing patient teaching plans and frequent monitoring of factors likely to facilitate self-care were pivotal nursing implications that emerged from this study.