Self-monitoring behaviors of cancer patients benefit patients, caregivers, and providers, and yet the phenomenon of self-monitoring from the cancer-patient perspective has not been studied. We examined cancer patients' self-monitoring preferences and practices, focusing on the meaning of self-monitoring within the cancer experience.

Semi-structured interviews were conducted among adult cancer patients who had been seen at least once at a rural United States cancer center. Questions sought out the meaning of self-monitoring and its practical aspects. Qualitative data were analyzed by adapting the four-stepped method by Giorgi for empirical phenomenological analysis.

Twenty participants were interviewed (11 women and 9 men). Transcribed interviews revealed that cancer patient self-monitoring is self-stylized work that ranges from simple to complex, while being both idiosyncratic and routine. Participants reported using tools with systems for use that fit their distinctive lives for the purpose of understanding and using information they deemed to be important in their cancer care. Three conceptual categories were discerned from the data that help to elucidate this self-stylized work as fitting their individual priorities and preferences, reflecting their identities, and being born of their work lives.

Findings highlight patients' unique self-monitoring preferences and practices, calling into question the assumption that the sole use of standardized tools are the most effective approach to engaging patients in this practice. Self-monitoring efforts can be validated when providers welcome or adapt to patients' self-stylized tools and systems. Doing so may present opportunity for improved communications and patient-centered care.

One prerequisite for palliative home care is the relatives' participation in the care. The relatives' situation in palliative home care is unique, as they support the sick person and also have a great need for support themselves. The aim of this care development project was to develop and implement separate structured conversations (SSC) with relatives of patients of an advanced palliative home care team (APHCT).

During the project, 61 conversations were held and 55 relatives answered a questionnaire. The questionnaire, eight semistructured interviews with relatives, and three focus-group discussions with nurses constitute the material for the evaluation.

Relatives have difficulties separating the SSC from the APHCT's care as a whole. They underline that the SSC was a part of an ongoing process. They also emphasize the value of having a conversation of their own in which the patient was absent, and in which the focus was on the relative's situation. For some, the conversation took place at the APHCT premises. The advantages of that were more privacy and the opportunity to walk around the inpatient palliative care units. The main problem during the project was conducting the SSC soon after the patient was enrolled with the APHCT.

Routinely offering one separate structured conversation with relatives with the intention of answering questions, talking about their willingness to provide care in the home, and mapping out their situation and social network, is a way to support both the relatives and the patients. The common structure of the conversations facilitated the assessment of the relatives' situation but did not hinder individualization according to the relatives' needs. The assumption is that all relatives should be offered a conversation.

Breathlessness is a subjective symptom, which makes it difficult to define and understand. The aim of the present study was to illuminate how patients suffering from breathlessness experience their everyday life.

The study was a qualitative study, and the focus of the analysis was the patients' descriptions of their experiences of breathlessness using a diary with two unstructured questions for a period of 7 consecutive days. Sixteen participants: 7 men, mean age 65 ± 7 (range 55–73 years old), and 9 women, mean age 65 ± 9 (range 50–72 years old) participated in the study.

Two themes emerged from the analysis: 1) Impaired quality of life and 2) symptom tolerance and adaptation. The theme “impaired quality of life” included the categories limited physical ability, psychological burdens, and social life barriers. The theme “symptom tolerance and adaptation” included importance of health care, social support, hobbies and leisure activities, and coping strategies.

The findings in our study showed that patients, in spite of considerable difficulties with shortness of breath, found relief in several types of activities, in addition to drug therapy. The result indicates that the “biopsychosocial model” is an appealing approach that should be discussed further to gain a better understanding of breathlessness.

This study sought to better understand the patient s perspective of the experience of recovery from cancer that appeared to defy medical prognoses.

Fourteen cases of medically verified exceptional outcomes were identified. A qualitative approach, employing long narrative interviews was used. Data was analyzed using a cross case thematic analytic approach.

The major overarching theme was connections, both internal and external. Internal included connections with God or a higher power and with oneself. The external connections, the focus of this paper, included 1) personal connections with friends and family, 2) connections with the medical system: the physician, nurses and other staff, and 3) connections with other patients. They described the nature of these relationships and the importance of frequent contact with family and friends as providing significant emotional and instrumental support. They expressed confidence in receiving care from a reputable clinic, and with very little probing illustrated the importance of the relationship with their providers. They articulated the significance of the compassionate qualities of the physician and identified communication attributes of their physician that were important in establishing this connection. These attributes were demeanor, availability, honesty, sensitivity in the decision making process. They provided examples of positive connections with nurses and other staff as well as with other patients through their illness process.

The importance of connections in these illness narratives was richly illustrated. These issues often are overlooked in clinical settings; yet they are of crucial importance to the health and well-being of the patients.

Research suggests that the strength of the relationship between body image and emotional distress decreases with age. Past research has focused on expected aging-related body changes, and has not yet examined unexpected body changes (e.g., breast cancer surgery). The present post-hoc study assessed relationships between age, body image, and emotional distress in women facing breast cancer surgery.

Older (≥65 years, n = 40) and younger (<65 years, n = 40) women were matched on race/ethnicity, marital status, and surgery type. Within one week prior to surgery, participants completed measures of demographics, aspects of body image, and emotional distress (general and surgery-specific).

Results indicated that: (1) body image did not differ by age (p > 0.999); (2) older women reported less pre-surgical emotional distress than younger women (p's < 0.01); and, (3) age moderated the relationship between body image and emotional distress (p's < 0.06).

The results suggest that younger women, particularly those with poor body image, are at an increased risk for pre-surgical emotional distress. These women may benefit from pre-surgical interventions designed to improve body image or to reduce pre-surgical emotional distress.

The aim of this study was to explore the type of relationship and the process of developing these relationships between nurses and patients in palliative care units in Japan. The special contribution that culture makes was examined to better understand the intensity of nurses’ grief after the death of their patient.

Thirteen Japanese registered nurses currently practicing in palliative care units were interviewed between July 2006 to June 2009. Theoretical sampling was utilised and the data were analysed using grounded theory methodology. Constant comparison was undertaken during coding processes until data saturation was achieved.

Significant cultural influences emerged both in the type of relationship nurses formed with patients and in the way they developed relationships. The type of relationship was termed ‘human-to-human’, meaning truly interpersonal. The cultural values of ‘Uchi (inside) and Soto (outside)’ have particular implications for the relationship. Four actions Being open, Trying to understand, Devoting time and energy, and Applying a primary nurse role, were identified as strategies for nurses to develop such relationships. The quality of this deeply committed encounter with patients caused nurses to grieve following patients’ death.

Culture is a major influence upon the reasons, complexities, and impact that lie behind nurses’ behaviours. Attention is needed to support nurses to sustain a fundamental caring quality in their relationships with patients.

As medical education evolves, emphasis on chronic care management within the medical curriculum becomes essential. Because of the consistent lack of appropriate end-of-life care training, far too many patients die without the benefits of hospice care. This study explores the association between physician knowledge, training status, and level of comfort with hospice care referral of terminally ill patients.

In 2011, anonymous surveys were distributed to physicians in postgraduate years 1, 2, and 3; fellows; hospital attending physicians; specialists; and other healthcare professionals in five hospitals of a large health system in New York. Demographic comparisons were performed using χ2 and Fisher's exact tests. Spearman correlations were calculated to determine if professional status and experience were associated with comfort and knowledge discussing end-of-life topics with terminal patients.

The sample consisted of 280 participants (46.7% response rate). Almost a quarter (22%) did not know key hospice referral criteria. Although 88% of respondents felt that knowledge of hospice care is an important competence, 53.2% still relinquished advance directives discussion to emergency room (ER) physicians. Fear of patient/family anger was the most frequently reported hospice referral barrier, although 96% of physicians rarely experienced reprisals. Physician comfort level discussing end-of-life issues and hospice referral was significantly associated with the number of years practicing medicine and professional status.

Physicians continue to relinquish end-of-life care to ER staff and palliative care consultants. Exploring unfounded and preconceived fears associated with hospice referral needs to be integrated into the curriculum, to prepare future generations of physicians. Medical education should focus on delivering the right amount of end-of-life care training, at the right time, within the medical school and residency curriculum.

The purpose of this paper is to summarize the use of the knowledge to action framework for adapting guidelines for practice and the evidence for effective implementation interventions to promote a quality response to cancer distress screening data.

We summarize progress in screening implementation in Ontario, Canada and the application of a systematic approach for adapting knowledge to practice and use of evidence-based knowledge translation interventions to ensure the uptake of best practices to manage distress.

While significant progress has been made in the uptake of distress screening it is less clear if this has resulted in improvements in patient outcomes, i.e., reduced distress. The use of evidence-based knowledge translation strategies tailored to barriers at many levels of care delivery is critical to facilitate the uptake of distress screening data by the primary oncology team.

There is a wealth of knowledge about the approaches that can be applied to translate knowledge into practice to improve psychosocial care and promote evidence-based distress management by the primary care oncology team. However, further implementation research is needed to advance knowledge about the most effective strategies in the context of cancer care.

Dementia is a terminal illness, and family caregivers play a vital role in providing end-of-life care to their relative. The present study begins to address the paucity of research regarding end-of-life caregiving experience with dementia.

This study utilized Munhall's methodology for interpretive phenomenology. Seven women and four men were interviewed two to three times within a year of their relative's death; interviews were transcribed verbatim and hermeneutically analyzed.

Findings reveal two essential aspects of end-of-life dementia caregiving: being-with and being-there. Further findings are organized according to the existential life worlds. Examination of the life worlds demonstrates that 1) spatiality provided a sense or lack of feeling welcome to provide end-of-life care; 2) temporality was an eternity or time melting away quickly, or the right or wrong time to die; 3) corporeality revealed feelings of exhaustion; and 4) relationality was felt as a closeness to others or in tension-filled relationships.

An understanding from bereaved caregivers’ perspectives will help healthcare practitioners better support and empathize with family caregivers. Further research is warranted that focuses on other places of death and differences in experience based on gender or relationship to the care receiver.

Experiencing cancer can give rise to existential concerns causing great distress, and consequently drive individuals to make sense of what cancer may mean to their lives. To date, meaning-based research in the context of cancer has largely focused on one possible outcome of this process, the emergence of positive meanings (e.g. post-traumatic growth). However, negative meanings may also be ascribed to cancer, simultaneously with positive meanings. This study focused on the nature of the co-existence of positive and negative meanings in a sample of individuals diagnosed with colorectal cancer to find out whether negative meaning had an impact on quality of life and psychosocial adjustment above and beyond positive meaning.

Participants were given questionnaires measuring meaning-made, quality of life, and psychological distress. Semi structured interviews were conducted with a subgroup from the original sample.

Hierarchical multiple regression analyses revealed that negative meaning-made (i.e. helplessness) was a significant predictor of poor quality of life and increased levels of depression/anxiety above and beyond positive meaning-made (i.e. life meaningfulness, acceptance, and perceived benefits). Correlational analyses and interview data revealed that negative meaning-made was mainly associated with physical and functional disability, while positive meaning-made was mostly related to emotional and psychological well-being.

Meanings of varying valence may simultaneously be ascribed to cancer as it impacts different life dimensions, and they may independently influence quality of life and psychosocial adjustment. The presence of positive meaning was not enough to prevent the detrimental effects of negative meaning on psychosocial adjustment and quality of life among individuals taking part in this study. Future attention to negative meaning is warranted, as it may be at least as important as positive meaning in predicting psychosocial adjustment and quality of life following a cancer diagnosis.

Palliative care requires nurses to be knowledgeable about different aspects of the care that they provide for dying patients. This study, therefore, was conducted to examine oncology and intensive care nurses' knowledge about palliative care in Southeast Iran.

Using the Palliative Care Quiz for Nursing (PCQN), 140 oncology and intensive care unit (ICU) nurses' knowledge about palliative care in three hospitals supervised by Kerman University of Medical Sciences was assessed.

In PCQN, the mean score was 7.59 (SD: 2.28). The most correct answers were in the category of management of pain and other symptoms (46.07%). The lowest correct answers were in the category of psychosocial and spiritual care (19.3%).

These findings suggest that nurses' knowledge about palliative care can be improved by establishing specific palliative care units to focus on end-of-life care. This establishment requires incorporation of an end-of-life nursing education curriculum into undergraduate nursing studies.

Anxiety often arises in conjunction with dyspnoea in patients with severe COPD. Considering the provoking symptomatology and the high mortality rate for COPD, it is reasonable to believe that these conditions trigger death-related and existential anxiety. Although anxiety causes considerable distress and reduces quality of life, people's experience of anxiety has been studied relatively little. The aim of this study was to explore severely ill COPD patients’ experience of anxiety and their strategies to alleviate anxiety.

This qualitative, in-depth interview study explored perceptions of anxiety and the alleviation strategies that are adopted. Interviews were analyzed using a thematic content analysis approach, involving interpretive coding and identification of themes. People suffering from COPD (stage III or IV) were recruited from a pulmonary outpatient clinic in the west of Sweden. Purposive sampling was used, and thirty-one (31) patients were included.

Most of the patients had experienced anxiety associated with COPD. Analyses revealed three major themes, death anxiety, life anxiety, and counterweights to anxiety. Death anxiety included fear of suffocation, awareness of death, fear of dying and separation anxiety. Life anxiety included fear of living and fear of the future. Counterweights to anxiety concerned coping with suffocation, avoiding strategy, and a sense of joy that defied their vulnerable situation.

The majority of patients experienced anxiety, which limited their lives. Although the patients experienced both life anxiety and death anxiety, they were able to cope with the situation and find a defiant joy to some extent.

To compare the experiences of women with metastatic breast cancer (MBC) in computer-mediated and face-to-face support groups.

Interviews from 18 women with MBC, who were currently in computer-mediated support groups (CMSGs), were examined using interpretative phenomenological analysis. The CMSGs were in an asynchronous mailing list format; women communicated exclusively via email. All the women were also, or had previously been, in a face-to-face support group (FTFG).

CMSGs had both advantages and drawbacks, relative to face-to-face groups (FTFGs), for this population. Themes examined included convenience, level of support, intimacy, ease of expression, range of information, and dealing with debilitation and dying. CMSGs may provide a sense of control and a greater level of support. Intimacy may take longer to develop in a CMSG, but women may have more opportunities to get to know each other. CMSGs may be helpful while adjusting to a diagnosis of MBC, because women can receive support without being overwhelmed by physical evidence of disability in others or exposure to discussions about dying before they are ready. However, the absence of nonverbal cues in CMSGs also led to avoidance of topics related to death and dying when women were ready to face them. Agendas for discussion, the presence of a facilitator or more time in CMSGs may attenuate this problem.

The findings were discussed in light of prevailing research and theories about computer-mediated communication. They have implications for designing CMSGs for this population.

Social and economic barriers can hinder access to quality palliative and end-of-life care for patients living in inner-city communities. Using a community-based participatory research (CBPR) approach, we investigated the stresses associated with living with a chronic disease and barriers to access and utilization of palliative care resources experienced by low-income patients and caregivers in five inner-city communities.

Four focus groups (N = 33) were conducted with community stakeholders, including healthcare professionals (social workers and nurses), persons living with chronic illnesses (e.g., HIV/AIDS, cardiovascular disease, and cancer), and caregivers. Focus group responses were analyzed using thematic analyses.

Patients' and caregivers' stresses centered around five themes: lack of family support, communication barriers with healthcare professionals, minority stress, caregiver burden, and lack of spiritual support. The community stakeholders identified resources and services to improve access to care and the quality of life of underserved, low-income populations living with chronic illnesses.

A CBPR approach enabled us to develop an interdisciplinary and culturally sensitive intervention to begin addressing the palliative and end-of-life needs of the patients and caregivers of the inner-city community.

Building high quality palliative care in rural areas must take into account the cultural dimensions of the rural context. The purpose of this qualitative study was to conduct an exploration of rural palliative care, with a particular focus on the responsibilities that support good palliative care from rural participants’ perspectives.

This ethnographic study was conducted in four rural communities in Western Canada between June 2009 and September 2010. Data included 51 days of field work, 95 semistructured interviews, and 74 hours of direct participant observation. Thematic analysis was used to provide a descriptive account of rural palliative care responsibilities.

Findings focus on the complex web of responsibilities involving family, healthcare professionals, and administrators. Family practices of responsibility included provision of direct care, managing and coordinating care, and advocacy. Healthcare professional practices of responsibility consisted of interpreting their own competency in relation to palliative care, negotiating their role in relation to that interpretation, and individualizing care through a bureaucratic system. Administrators had three primary responsibilities in relation to palliative care delivery in their community: navigating the politics of palliative care, understanding the culture of the community, and communicating with the community.

Findings provide important insights into the complex ways rurality influences understandings of responsibility in palliative care. Families, healthcare providers, and administrators work together in fluid ways to support high quality palliative care in their communities. However, the very fluidity of these responsibilities can also work against high quality care, and are easily disrupted by healthcare changes. Proposed healthcare policy and practice changes, particularly those that originate from outside of the community, should undergo a careful analysis of their potential impact on the longstanding negotiated responsibilities.

The aim of this project was to study prolonged grievers psychosocial processes and experience during participation in a group intervention and 6–8 weeks after discontinuation. The intervention in this study was a group therapy with the aim of getting in contact with their pain and loss and confronting and working with this loss.

Data was collected by using diaries and tape-recorded interviews, analyzed with grounded theory. The participants were 11 females between the ages of 33 and 71.

The main process that was found in the qualitative data was: Ambivalence when struggling and learning through work and rest towards a balance. Sub-processes were: To share and be confirmed in the group through sense of cohesion; To dare/venture to discover problems and solutions; To react when you get emotionally involved, and to compare and discover.

This study gives insight into prolonged grievers' thinking, which is valuable knowledge. Rather than assuming that all individuals suffering from prolonged grief need the same treatment, we suggest that there should be a range of different therapies.

The burden experienced by informal caregivers (ICs) of patients with advanced cancer is well documented. ICs are at risk for anxiety and depression, as well as existential concerns that arise when a loved one is facing a terminal illness. Few psychosocial interventions focus on existential concerns of ICs. However, a growing body of literature indicates that finding meaning in the experience of being an IC for a person with cancer has the potential to buffer against burden. The purpose of this study was to collect preliminary descriptive data regarding caregiver burden, meaning, and psychosocial service use to inform the adaptation of a meaning-centered intervention for ICs.

Twenty-five caregivers and 32 patients completed brief, anonymous questionnaires that asked about their role as a caregiver or their perception of their loved one as a caregiver, caregiver burden, and psychosocial service use.

Caregivers and patients identified anxiety and depression as top correlates of burden experienced by caregivers, whereas guilt, issues with role/sense of identity, and self-care were additional areas of concern. The majority of caregivers were not receiving psychosocial services, although they almost unanimously reported desiring services. A greater proportion of patients than caregivers believed that an intervention designed to enhance meaning would ameliorate burden, but, nevertheless, close to three quarters of caregivers reported interest in participating in such an intervention.

These study findings provide further support for, at a minimum, engaging ICs of persons with advanced cancer in interventions that address existential issues, mental health, self-care, and service use. Such interventions are likely to improve the quality of life of both patients with cancer and their ICs.

This study investigates an approach based on Kaplan's Attention Restorative Theory (ART) to develop a non-pharmacological intervention to help individuals manage the distressing effects of illness related fatigue. The study aims to: identify activities perceived as being enjoyable by individuals who have moderate to severe fatigue related to advanced illness; determine the core attributes of potentially beneficially interventions; analyse reported ‘enjoyable’ experiences within the ART framework by mapping emergent themes to attributes of attention restoration; and develop the prototype for a self-management intervention tool.

A purposive sample of 25 individuals who experienced moderate to severe fatigue was selected from the local hospice and community. Focused semi-structured interviews probed the questions: What do you enjoying doing? What is it about the activity that you particularly enjoy? Framework analysis was used to manage responses.

Seventy-five ‘enjoyable experiences’ were identified, including artistic pursuits, voluntary work, socialising and learning. These activities were organised into four conceptual themes: Belonging, Expansive, Nurturing and Purposeful. When mapped against attributes of restorative activities specified in ART, there was some congruence and variation. It was clear that the participants expressed a great need to be safe and in a nurturing environment. Some participants placed a high value in and received great joy from contributing to the community; this was not noted in previous ART literature.

This study has extended Kaplan's insightful work on restorative behaviours by revealing the value that purposeful, engaging and safe activities hold for people who live with fatigue. ART has inspired the research team to develop a self-management intervention tool to guide health care practitioners in promoting a non-pharmacological approach to manage fatigue through exploring, discovering and promoting experiences which engage, excite, nurture and challenge the person. Further research is needed to integrate this approach into clinical practice.

Distress screening guidelines call for rapid screening for emotional distress at the time of cancer diagnosis. The purpose of this study was to examine the distress thermometer's (DT) ability to screen in patients in treatment for advanced cancer who may be depressed.

Using cross-sectional data collected from patients within 30 days of diagnosis with advanced cancer, this study used ROC analysis to determine the optimal-cutoff point of the distress thermometer (DT) for screening for depression as measured by the physician health questionnaire (PHQ)-9; inter-test reliability analysis to compare the DT with the PHQ-2 for screening in possible cases of depression, and multivariate analysis to examine associations among the DT emotional problem list (EPL) items with cases of depression.

The average age of the 123 patients in the study was 59.9 (12.9) years. Seventy (56.9%) were female. All had Stage 3 or 4 cancers (40% gastrointestinal, 19% gynecologic, 20% head and neck, 21% lung). The mean DT score was 4 (2.7)/10; and 56 (43%) were depressed as measured by the PHQ-9 ≥5. The optimal DT cut-off score to screen in possible cases of depression was ≥2/10, with a sensitivity of .96, compared to a sensitivity of .32 of the PHQ-2 ≥2. Correlation coefficients for the DT ≥2 and the PHQ-2 with the PHQ-9 ≥5 were 0.4 and −0.2, respectively. EPL items associated with cases of depression were Depression (OR = 0.15, 0.02–0.85) and Sadness (OR = 0.21, 0.06–0.72).

The optimal DT threshold for identifying possible cases of depression at the time of diagnosis is ≥2; this threshold is more sensitive than the PHQ-2 ≥2. EPL items may be used with the DT score to triage patients for evaluation.