In this study, the authors examine the under-investigated topic of patient-provided support for spouse caregivers. Thirty-four men with prostate cancer and their female partners were interviewed separately three times: before the man's radical prostatectomy, 8 to 10 weeks postsurgery, and 1 year postsurgery. The core category of active consideration encompassed 4 dimensions: easing spousal burden, keeping us up, maintaining connection, and considering spouse. Patient-provided support entails two overlapping tasks: minimizing the practical and emotional impact of the illness and tending to the caregiver's social-emotional needs. A theory expounding on the double bind of being both a patient and an agent in light of masculine socialization practices is articulated and brought to bear on the phenomenon of patient-provided support.
Comment In: Evid Based Nurs. 2003 Jan;6(1):3112546049
This study is about what adolescents with cancer think about their life situation, the support they get, and the information they receive about their illness. The data for this qualitative and descriptive study were collected in 3 focus group interviews with 20 adolescents aged 13 to 18 years attending a cancer adjustment camp. Interpretation was based on the method of inductive content analysis. The adolescents' experiences of their current situation were analyzed into 5 categories: views on life here and now, negative experiences of self because of the illness, resources recognized in self, difficulties caused by the illness in relation to life around them, and resources identified in the world around. They made very little, if any, conscious effort to plan ahead for the future. The information received by the adolescents concerned their illness and its treatment here and now, various practical matters, as well as the future impacts of the illness and its treatments. Most of this information focused on the here and now, whereas the adolescents' information needs were mainly oriented to the future. As for the adolescents' chances to take part in making decisions about their care and life, the analysis yielded 6 categories: joint decision making, inadequate chances for decision making, independent decision making, illusion of decision making, reluctant to make decisions, and excluded from decision making. Finally, the adolescents' hopes for improvement were focused on staff activities, physical care facilities, chances to discuss and work through their experiences of the illness, and the support received from society.
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
A qualitative study was conducted to obtain a deeper understanding of the hospice care of terminally ill cancer patients, where care was delivered via a primary nursing system combined with a team setting. Relatives of terminally ill cancer patients (n = 20) and the personnel (n = 8) participated in open-ended interviews. Phenomena relating to the philosophy of primary nursing and the hospice movement (continuity; closeness; accountability 24 h/day; individualized care; satisfied physical, psychological, social, and spiritual needs; and support to relatives) were experienced by the relatives, nurses, and physician as "good care." Most of the phenomena defined as important needs by the relatives and personnel were met when the primary nurse was on duty and the team was intact. Needs that were unmet were mainly a result of lack of continuity. Caring for the terminally ill via primary nursing in a team setting was regarded as two-sided by the nurses. It was seen as stimulating and rewarding, as well as demanding and burdensome. Therefore, the need for support to the nurses involved was deeply stressed.
The purpose of this study was to identify and compare information and decision preferences of men with prostate cancer and their partners at the time of diagnosis. A convenience sample of 80 couples was recruited from The Prostate Centre in Vancouver, Canada. Participants used a computerized version of two previously used measures with this population: Control Preferences Scale and Information Survey Questionnaire. Results showed that men had a preference to play either an active or a collaborative role in decision making with their physician (92.5%) and partners (100%). The majority (55%) of partners wanted to play a collaborative role in treatment decision making. Couples identified prognosis, stage of disease, treatment options, and side effects as the top 4 information preferences. Men ranked information on sexuality more important than partners, and partners ranked information on home self-care higher than men. Men who had sons, a positive family history, and lower levels of education ranked heredity risk significantly higher. Profiles of information categories did not differ according to role preferences of either men or partners. The computer program has been shown to be a reliable and acceptable method of assessing information and decision preferences of these couples. An individualized approach is suggested, given the high reliability of individual's profiles.
OBJECTIVE: General practitioner (GP) involvement may be instrumental in obtaining successful palliative cancer trajectories. The aim of the study was to examine associations between bereaved relatives' evaluation of palliative cancer trajectories, place of death, and GP involvement. DESIGN: Population-based, cross-sectional combined register and questionnaire study. SETTING: The former Aarhus County, Denmark. SUBJECTS: Questionnaire data on GPs' palliative efforts and relatives' evaluations of the palliative trajectories were obtained for 153 cases of deceased cancer patients. MAIN OUTCOME MEASURES: A successful palliative trajectory as evaluated retrospectively by the relatives. RESULTS: Successful palliative trajectories were statistically significantly associated with home death (PR 1.48 (95% CI 1.04; 2.12)). No significant associations were identified between the evaluations of the palliative trajectory at home and GP involvement. "Relative living with patient" (PR 1.75 (95% CI: 0.87; 3.53)) and "GP having contact with relatives" (PR 1.69 (95% CI 0.55; 5.19)) were not significantly associated, but this may be due to the poor number of cases included in the final analysis. CONCLUSION: This study indicates that home death is positively associated with a higher likelihood that bereaved relatives will evaluate the palliative trajectory at home as successful. No specific GP services that were statistically significantly associated with higher satisfaction among relatives could be identified, but contact between GPs and relatives seems important and the impact needs further investigation.
The aim of the study was to explore the emotional and interactional perspectives of the meaning of illness in patients with colorectal cancer. Fifty-two respondents were included in the study. Data were obtained through an open-ended question at the time of diagnosis as well as 3 and 12 months after diagnosis. The constant comparative method of data analysis, consisting of an interpretation of the data, was used. The overall ascribed meaning was expressed in the main theme, attempting to find meaning in illness to achieve emotional coherence. The main theme consisted of 2 dimensions: unified and dichotomized embodiment. The unified embodiment dimension subthemes include gratefulness, confidence in oneself and others, and looking forward to creating a new future. The dichotomized embodiment dimension subthemes include altered self-value, loss of temporality, and infringement of body integrity. The characteristics of unified embodiment were hope and faith, a strong self-value, and an anticipated future. For dichotomized embodiment, the characteristics were the struggle, loss of temporality, nonmovement, and lack of hope and faith. The study provided a theoretical basis that is relevant for both nursing practice and nursing education.
The purpose of this study was to describe the experience of being a patient with a brain tumor in the neurosurgery clinic of a university hospital. Eight brain tumor patients volunteered to participate. The data were collected by interviewing the participants on the day preceding brain surgery and 3-7 days postoperatively. The interviews were analyzed by inductive content analysis. Preoperatively, some patients had a fearless and calm attitude towards their illness, while others were fearful and depressed. Postoperatively, the patients' body images changed, and they were concerned about the future. They perceived their care as matter-of-fact and friendly both before and after the surgery, and they thought their basic needs were met. Some patients would have wanted more psychological support, especially after the surgery, while others found the psychological support adequate. The patients were willing to participate in decision making about their care, and they trusted the professional skill and competence of the nurses. Suggested improvements in care were to minimize the atmosphere of urgency and hurry, appoint a primary nurse for each patient, and give more attention to after-care.