Abstract Background: Given the distress associated with cancer experiences, there is a growing interest in mindfulness-based expressive arts interventions (MBAIs) for promoting patients' well-being. Our research objective was to develop a theoretical understanding of how patients with cancer experience, use, and draw meaning from an MBAI. Methods: We used a constructivist grounded theory research design and gathered narrative descriptions of participants' (N = 32) MBAI experiences through semistructured interviews and field notes. Participants brought the artwork they had created in the group, facilitating art elicitation. Data were analyzed with grounded theory methods. Results: Participants described how the dynamic interplay of mindfulness, the arts, group sharing, and bearing witness facilitated the processing and sharing of hidden thoughts, experiences, and emotions. The group facilitated several unique meaning-making processes, including re-envisioning personal identity within disruption and loss, creating a fitting container for the exploration of diverse emotions, revisiting difficult experiences within the sensitivity of art, and visualizing hope and healing. This process resulted in important learnings and benefits for living in the here and now: relational connections, facing cancer through artistic play, discovering intuition and personal resources, learning an emotional language and a new mindset to move forward, understanding what one needs to heal, and fostering gratitude and hope. Conclusions: MBAIs allowed for a multimodal form of meaning making which facilitated coping, adjustment, and living well with cancer. These findings will enable practitioners to design and implement more effective health services and inform future research about this therapeutically promising approach to psychosocial oncology care.

Background Research has identified inadequacies in the quality and quantity of dementia-related information, particularly end-of-life information provided to those living with dementia and their family caregivers. The purpose of this study was to identify what types of information family caregivers of persons living with dementia in nursing homes would deem useful in preparing them for their relative's end-of-life and assist them to make decisions about care along the dementia trajectory. Methods The qualitative methodology of interpretive description was used to guide the study in which semi-structured interviews were conducted with nursing home staff in clinical roles (e.g., nurses, health care aides, social workers, speech language pathologists; N = 26), palliative care clinicians (N = 7), and bereaved family caregivers of persons with dementia (N = 17). Data were analyzed using thematic analysis. Findings Eight substantive categories essential to meeting family members' needs for information and preparing them for the future were identified including: (i) dementia in general, (ii) dementia toward the end-of-life, (iii) care of persons dying with dementia, (iv) the role of family caregiver as decision maker, (v) sustaining connection, (vi) emotional impact of dementia on caregivers, (vii) relationships with staff, and (viii) general questions about life in a NH. Conclusion Our findings suggest that family caregivers of nursing home residents with dementia have unique information and support needs, some disease specific, others more related to life in a nursing home in general. Health care providers need to support and encourage dementia literacy for family caregivers. A key strategy is to proactively broach these topic areas, as too often family caregivers may not recognize or value their need for information.

Purpose: Little is known about black African (BA) and black African-Caribbean (BAC) men's views towards cancer; yet culture and acculturation can contribute to the way in which people understand, explain and develop their attitudes towards cancer. Hence, cancer prevention and early detection strategies may not be sensitive to United Kingdom (UK)-based black men's views, affecting their awareness of risk factors and early detection services. This study explored the views of UK -based BA and BAC men towards cancer.Method: In collaboration with black community organisations based in four major cities in the UK, 25 participants were recruited using convenience and theoretical sampling methods. Data were collected using 33 semi-structured interviews, and analysed using grounded theory analytic procedures.Results: One core category (cancer through black eyes) and seven sub-categories emerged; 'cultural views', 'religious beliefs', 'avoiding Babylon', 'alienation', 'suspicious mind', 'advertisements and information influence very little', and 'gap in service provision (bridging the gap)'. Participants' views towards cancer were linked to socially constructed perspectives, linked with cultural and religious beliefs, and shaped by what being a black male means in society. Risk factors such as smoking and obesity had different meanings and symbolisation through black eyes. There were macro- and micro-level similarities and differences between BA and BAC men.Conclusions: Cancer services and related public-health campaigns aimed at black men need to understand cancer through black eyes. Public health campaigns based solely on the clinical meaning of cancer are incongruent with black men's understandings of cancer, and therefore ineffective at reducing health inequality. (C) 2017 Elsevier Ltd. All rights reserved.

Context. Failure to acknowledge personhood is often the cause of patient and family dissatisfaction. We developed the Patient Dignity Question (PDQ) as a simple means of inquiring about personhood: "What do I need to know about you as a person to give you the best care possible?''Objectives. This study aimed to evaluate the impact of the PDQ on patients and families, evaluate its influence on health care providers (HCPs), and determine if HCP characteristics mediate receptivity to PDQ-elicited information.Methods. Palliative care patients or their family members were asked to respond to the PDQ. Responses were summarized, read to participants to ensure accuracy, and with permission, placed in their charts. Patient, family, and HCP responses to the PDQ were then elicited.Results. A total of 126 participants (66 patients and 60 family members) responded to the PDQ; 99% indicated that the summaries were accurate, 97% permitted the summary to be placed in the chart, 93% felt that the information was important for HCPs to know, and 99% would recommend the PDQ for others. A total of 137 HCPs completed 293 evaluations of individual PDQs; 90% indicated that they learned something new from it, 64% that they were emotionally affected by it, 59% that it influenced their sense of empathy, and 44% that it influenced their care. HCP empathy, job satisfaction, having a meaningful life, and social support mediated responsiveness to PDQ-elicited information.Conclusion. The PDQ offers an effective way of eliciting personhood, enhancing patient, family, and HCP experience alike. (C) 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Recording consultations helps patients revisit information and reduces pressure on staff, say Thomas Hack and Kinta Beaver

Breast cancer survivors can anticipate a number of years of paid labor market participation. Therefore, the link between breast cancer survivorship and productivity deserves serious consideration. The hypothesis guiding this study is that arm disability, particularly pain and range of motion limitations, are important explanatory variables in survivors' loss of productivity. The study investigates the association between productivity and arm disability over time. The longitudinal data are drawn from survivors in four geographical locations in Canada. Regression results indicate that survivors with arm pain, 2.5 to 3 years postsurgery, are almost 8 times more likely to experience a loss in productivity compared to those survivors without pain, and those with some range of motion limitations are 4 times more likely to experience productivity loss 2.5 to 3 years postsurgery compared to their counterparts without limitations. More than 40% of survivors begin to or continue to experience productivity loss as long as 30 to 36 months after surgery and that the loss in productivity is primarily due to two forms of arm disability: pain and range-of-motion limitations. These findings highlight the importance of rehabilitation programming for breast cancer survivors.

Understanding the complexities of distress and knowing who is most vulnerable is foundational to the provision of quality, palliative end-of-life care. Although prior studies have examined the prevalence of symptom distress among patients nearing death, these studies have tended to largely focus on physical and, to a lesser extent, psychological challenges. The aim of this study was to use the Patient Dignity Inventory (PDI), a novel, reliable, and validated measure of end-of-life distress, to describe a broad landscape of distress in patients who are terminally ill. The PDI, a 25-item self-report, was administered to 253 patients receiving palliative care. Each PDI item is rated by patients to indicate the degree to which they experience various kinds of end-of-life distress. Palliative care patients reported an average of 5.74 problems (standard deviation, 5.49; range, 0–24), including physical, psychological, existential, and spiritual challenges. Being an inpatient, being educated, and having a partner were associated with certain kinds of end-of-life problems, particularly existential distress. Spirituality, especially its existential or “sense of meaning and purpose” dimension, was associated with less distress for terminally ill patients. A better appreciation for the nature of distress is a critical step toward a fuller understanding of the challenges facing the terminally ill. A clear articulation of the landscape of distress, including insight regarding those who are most at risk, should pave the way toward more effective, dignity-conserving end-of-life care.

PURPOSE/OBJECTIVESTo chart the incidence and course of three types of arm morbidity (lymphedema, pain, and range of motion [ROM] restrictions) in women with breast cancer 6-12 months after surgery and the relationship between arm morbidity and disability.DESIGNLongitudinal mixed methods approach.SETTINGFour sites across Canada.SAMPLE347 patients with breast cancer 6-12 months after surgery at first point of data collection.METHODSIncidence rates were calculated for three types of arm morbidity, correlations between arm morbidity and disability were computed, and open-ended survey responses were compiled and reviewed.MAIN RESEARCH VARIABLESLymphedema, pain, ROM, and arm, shoulder, and hand disabilities.FINDINGSAlmost 12% of participants experienced lymphedema, 39% reported pain, and about 50% had ROM restrictions. Little overlap in the three types of arm morbidity was observed. Pain and ROM restrictions correlated significantly with disability, but most women did not discuss arm morbidity with healthcare professionals.CONCLUSIONSPain and ROM restrictions are prevalent 6-12 months after surgery, but lymphedema is not. Pain and ROM restrictions are associated with disability.IMPLICATIONS FOR NURSINGScreening for pain and ROM restrictions should be part of breast cancer follow-up care. Left untreated, arm morbidity could have a long-term effect on quality of life. Additional research into the longevity of various arm morbidity symptoms and possible interrelationships also is required.

Quality palliative care depends on a deep understanding of distress facing patients nearing death. Yet, many aspects of psychosocial, existential and spiritual distress are often overlooked. The aim of this study was to test a novel psychometric—the Patient Dignity Inventory (PDI)—designed to measure various sources of dignity-related distress among patients nearing the end of life. Using standard instrument development techniques, this study examined the face validity, internal consistency, test–retest reliability, factor structure and concurrent validity of the PDI. The 25-items of the PDI derive from a model of dignity in the terminally ill. To establish its basic psychometric properties, the PDI was administered to 253 patients receiving palliative care, along with other measures addressing issues identified within the Dignity Model in the Terminally Ill. Cronbach's coefficient alpha for the PDI was 0.93; the test–retest reliability was r = 0.85. Factor analysis resulted in a five-factor solution; factor labels include Symptom Distress, Existential Distress, Dependency, Peace of Mind, and Social Support, accounting for 58% of the overall variance. Evidence for concurrent validity was reported by way of significant associations between PDI factors and concurrent measures of distress. The PDI is a valid and reliable new instrument, which could assist clinicians to routinely detect end-of-life dignity-related distress. Identifying these sources of distress is a critical step toward understanding human suffering and should help clinicians deliver quality, dignity-conserving end-of-life care.

PURPOSE:Dignity Therapy is a novel therapeutic intervention designed to address psychosocial and existential distress among the terminally ill. This brief, individualized approach to end-of-life care invites patients to discuss issues that are most important to them and to articulate things they would most want remembered as death draws near. These discussions and recollections are recorded, transcribed, and edited into a generativity document, which are usually given to family or loved ones. While the marked benefits of Dignity Therapy on patients' psychosocial and existential distress have been reported elsewhere, this paper presents data on bereft family members' perspectives regarding the impact of dignity therapy on patients and themselves.SUBJECTS AND METHODS:Sixty family members of deceased terminally ill patients who previously took part in Dignity Therapy completed a questionnaire to elicit feedback about the impact of Dignity Therapy on both the dying patient and themselves.RESULTS:Ninety-five percent of participants reported that Dignity Therapy helped the patient; 78% reported that it heightened the patient's sense of dignity; 72% reported that it heightened the patient's sense of purpose; 65% reported that it helped the patient prepare for death; 65% reported that it was as important as any other aspect of the patient's care; and 43% reported that Dignity Therapy reduced the patient's suffering. Regarding family members, 78% reported that the generativity document helped them during their time of grief; 77% reported that the document would continue to be a source of comfort for their families and themselves; and 95% reported they would recommend Dignity Therapy to other patients of family members confronting a terminal illness.CONCLUSION:Family members endorse Dignity Therapy as a therapeutic intervention that moderates their bereavement experiences and lessens suffering and distress in terminally ill relatives.