Integrating mindfulness and the expressive arts for meaning making in cancer care: A grounded theory of the processes, facilitators, and challenges.

PURPOSE: There is a growing interest in mindfulness-based expressive arts interventions in oncology, to help patients process their experiences, learn how to live with cancer, and ameliorate psychological distress. Our research purpose was to explore how patients with cancer experience a mindfulness-based expressive arts group intervention, and to articulate individual and contextual factors influencing their experiences. METHODS: We conducted a constructivist grounded theory study and recruited 32 participants who experienced a 10-week mindfulness-based expressive arts group intervention at a tertiary cancer center in mid-Western Canada. We gathered socio-demographic data and descriptions of their experiences through semi-structured interviews. Participants brought art they had created to facilitate art elicitation. Socio-demographic data were analyzed with descriptive statistics and all other data with grounded theory methods. RESULTS: Our findings revealed how entering the group and meaning making processes through mindfulness enabled participants to let go of their ruminations and calm their minds so they could fully engage in arts activities. Participants found inspiration for their artistic expressions in mindfulness meditation which allowed them to express themselves in new ways. Although this work was challenging, combining mindfulness and the arts created a unique healing space in which individual work was nested within group processes. There were notable personal factors and perspectives that influenced participants' experiences, as well as factors related to the group design and facilitator. CONCLUSIONS: Our findings provide insight into how and when this intervention was meaningful for patients, and have important implications to guide ongoing intervention development, implementation, and evaluation.

Mindfulness-based arts interventions for cancer care: A systematic review of the effects on wellbeing and fatigue.

OBJECTIVE: Upon receiving a cancer diagnosis, life irrevocably changes and complex experiences of emotional distress often occur. There is a growing interest in mindfulness-based arts interventions (MBAIs) to ameliorate the distress many patients experience. Our review objective was to synthesize the evidence on the effectiveness of MBAIs on psychological wellbeing and fatigue. METHOD: Relevant quantitative articles were identified through a systematic search of the grey literature and online databases including MEDLINE, CINAHL, Cochrane CENTRAL, Art Full Text, ART bibliographies Modern, PsycINFO, Scopus, and EMBASE. Two independent reviewers screened titles/abstracts against predetermined inclusion criteria, read full-text articles for eligibility, conducted quality appraisals of included articles, and extracted pertinent data with a standardized data extraction form. The heterogeneity of the included studies precluded a meta-analysis and a narrative synthesis of study outcomes was conducted. RESULTS: Our systematic search retrieved 4241 titles/abstracts, and 13 studies met our inclusion criteria (eight randomized controlled trials and five quasi-experiments). Most of the studies focused on patients with cancer (92.3%). There is a growing interest in MBAIs over time and significant heterogeneity in the types of interventions. A significant effect was found on several outcomes that are important in psychosocial oncology: quality of life, psychological state, spiritual wellbeing, and mindfulness. The effect on fatigue was equivocal. CONCLUSIONS: This novel intervention demonstrates promise for the psychosocial care of patients with cancer. These findings are an essential antecedent to the continued implementation, development, and evaluation of MBAIs in oncology.

The psychosocial experiences of women with breast cancer across the lifespan: a systematic review.

OBJECTIVE: To summarize the psychosocial experience of women with breast cancer from a lifespan perspective by examining the findings of qualitative studies. METHODS: A meta-aggregate review of 24 qualitative studies was undertaken. To be included, studies must include women with a breast cancer diagnosis and focus on younger or older women (as defined by the study), or compare a psychosocial issue across the lifespan. Eight databases were searched systematically. RESULTS: Study participants ranged in age from 26 to 91 years. Sixteen studies focused on younger women, six focused on older women, and two included women across the lifespan. A total of 155 findings were extracted from the studies and were aggregated into 11 categories. These were synthesized into four synthesized findings: (a) dealing with cancer, (b) the importance of caring, (c) the aftermath of cancer, and (d) fertility and infertility. CONCLUSIONS: Further research is required to explore these findings, and to examine the needs of older women in particular. Delineating the similarities and differences in the needs of women across the lifespan will inform the development of psychosocial interventions for all women with breast cancer.

Barriers to information provision regarding breast cancer and its treatment.

PURPOSE: Women with breast cancer require information about their cancer and its treatment during the process of treatment decision-making, yet it is unclear if there are barriers to information support. This study explores the experience of making treatment decisions in breast cancer, paying particular attention to the barriers experienced to the provision of information. METHODS: Using a grounded theory methodology, semi-structured interviews were conducted with 22 women with invasive breast cancer exploring the experience of treatment decision-making. Data was organized using ATLAS.ti software and analyzed using constant comparisons. RESULTS: Analysis of the data showed that barriers to cancer and treatment information include intrapersonal and interpersonal communication challenges (emotional distress, patient-provider communication, "making it personal," access to information) which reside at different levels of the breast cancer experience (individual, dyad, group, organization). A model is provided to depict this experience. CONCLUSIONS: Women want information about their cancer and its treatment and experience barriers to information provision at various levels. Satisfactory information provision cannot occur without addressing barriers at every level. Utilizing interprofessional models of care may minimize existing barriers to information provision and empower patients to make satisfying treatment decisions that are consistent with their individual wishes.

The experiences and needs of unpaid family caregivers for persons living with dementia in rural settings: A qualitative systematic review.

PURPOSE: Unpaid family caregivers provide extensive support for community-dwelling persons living with dementia, impacting family caregivers' health and wellbeing. Further, unpaid family caregiving in rural settings has additional challenges because of lower access to services. This systematic review examines qualitative evidence to summarize the experiences and needs of rural unpaid family caregivers of persons living with dementia. METHODS: CINAHL, SCOPUS, EMBASE, Web of Science, PsychINFO, ProQuest, and Medline were searched for articles investigating the experience and needs of rural family caregivers of persons living with dementia. Eligibility criteria were: 1) original qualitative research; 2) written in the English language; 3) focused on the perspectives of caregivers of community-dwelling persons with dementia; 4) focused on rural settings. Study findings were extracted from each article and a meta-aggregate process was used to synthesize the findings. FINDINGS: Of the 510 articles screened, 36 studies were included in this review. Studies were of moderate to high quality and produced 245 findings that were analyzed to produce three synthesized findings: 1) the challenge of dementia care; 2) rural limitations; 3) rural opportunities. CONCLUSIONS: Rurality is perceived as a limitation for family caregivers in relation to the scope of services provided but can be perceived as a benefit when caregivers experience trustworthy and helpful social networks in rural settings. Implications for practice include establishing and empowering community groups to partner in the provision of care. Further research must be conducted to better understand the strengths and limitations of rurality on caregiving.

No Other Safe Care Option: Nursing Home Admission as a Last Resort Strategy.

BACKGROUND AND OBJECTIVES: Nursing homes are intended for older adults with the highest care needs. However, approximately 12% of all nursing home residents have similar care needs as older adults who live in the community and the reasons they are admitted to nursing homes is largely unstudied. The purpose of this study was to explore the reasons why lower-care nursing home residents are living in nursing homes. RESEARCH DESIGN AND METHODS: A qualitative interpretive description methodology was used to gather and analyze data describing lower-care nursing home resident and family member perspectives regarding factors influencing nursing home admission, including the facilitators and barriers to living in a community setting. Data were collected via semistructured interviews and field notes. Data were coded and sorted, and patterns were identified. This resulted in themes describing this experience. RESULTS: The main problem experienced by lower-care residents was living alone in the community. Residents and family members used many strategies to avoid safety crises in the community but experienced multiple care breakdowns in both community and health care settings. Nursing home admission was a strategy used to avoid a crisis when residents did not receive the needed support to remain in the community. DISCUSSION AND IMPLICATIONS: To successfully remain in the community, older adults require specialized supports targeting mental health and substance use needs, as well as enhanced hospital discharge plans and improved information about community-based care options. Implications involve reforming policies and practices in both hospital and community-based care settings.

Effectiveness of mindfulness-based arts interventions on psychological wellbeing and fatigue in adults with a physical illness: a systematic review protocol.

REVIEW QUESTION/OBJECTIVE: The objective of this review is to synthesize evidence on the effectiveness of mindfulness-based arts interventions on psychological wellbeing and fatigue in adults with a physical illness.

Assessing Symptoms, Concerns, and Quality of Life in Noncancer Patients at End of Life: How Concordant Are Patients and Family Proxy Members?

CONTEXT: It has become commonplace to use family caregivers as proxy responders where patients are unable to provide information about their symptoms and concerns to health care providers. OBJECTIVES: The objective of this study was to determine the degree of concordance between patients' and family members' reports of patient symptoms and concerns at end of life. METHODS: Sample dyads included a mix of patients residing at home, in a nursing home, in a long-term care facility, or in hospice. Diagnoses included patients with amyotrophic lateral sclerosis (n = 75), chronic obstructive pulmonary disease (n = 52), end-stage renal disease (n = 42), and institutionalized, cognitively intact frail elderly (n = 49). Dyads completed the Patient Dignity Inventory (PDI), the modified Structured Interview Assessment of Symptoms and Concerns in Palliative Care, and Graham and Longman's two-item Quality of Life Scale. RESULTS: Concordance was less than 70% for seven of the 25 PDI items, with the lowest concordance (65.1%) for the item "not being able to continue with my usual routines." For all but one PDI item, discordance was in the direction of family members reporting that the patient was worse off than the patient had indicated. Where discordance was observed on the Structured Interview Assessment of Symptoms and Concerns in Palliative Care and Quality of Life Scales, the trend toward family members overreporting patient distress and poor quality of life continued. CONCLUSION: Understanding discordance between patients and family member reports of symptoms and concerns is a valuable step toward minimizing patient and family burden at end of life.

Correction: Dignity and Distress towards the End of Life across Four Non-Cancer Populations.

[This corrects the article DOI: 10.1371/journal.pone.0147607.].

Dignity and Distress towards the End of Life across Four Non-Cancer Populations.

OBJECTIVE: The purpose of this study was to identify four non-cancer populations that might benefit from a palliative approach; and describe and compare the prevalence and patterns of dignity related distress across these diverse clinical populations. DESIGN: A prospective, multi-site approach was used. SETTING: Outpatient clinics, inpatient facilities or personal care homes, located in Winnipeg, Manitoba and Edmonton, Alberta, Canada. PARTICIPANTS: Patients with advanced Amyotrophic Lateral Sclerosis (ALS), Chronic Obstructive Pulmonary Disease (COPD), End Stage Renal Disease (ESRD); and the institutionalized alert frail elderly. MAIN OUTCOME MEASURE: In addition to standardized measures of physical, psychological and spiritual aspects of patient experience, the Patient Dignity Inventory (PDI). RESULTS: Between February 2009 and December 2012, 404 participants were recruited (ALS, 101; COPD, 100; ESRD, 101; and frail elderly, 102). Depending on group designation, 35% to 58% died within one year of taking part in the study. While moderate to severe loss of sense of dignity did not differ significantly across the four study populations (4-11%), the number of PDI items reported as problematic was significantly different i.e. ALS 6.2 (5.2), COPD 5.6 (5.9), frail elderly 3.0 (4.4) and ESRD 2.3 (3.9) [p < .0001]. Each of the study populations also revealed unique and distinct patterns of physical, psychological and existential distress. CONCLUSION: People with ALS, COPD, ESRD and the frail elderly face unique challenges as they move towards the end of life. Knowing the intricacies of distress and how they differ across these groups broadens our understanding of end-of-life experience within non-cancer populations and how best to meet their palliative care needs.

Young men with cancer: a literature review.

BACKGROUND: The impacts of cancer on young men are reportedly different from the experiences of others. These impacts may adversely affect the health and the healthcare of young men. OBJECTIVE: The purpose of this article was to conduct a literature review to examine what is known about the experiences of young men with cancer. METHODS: A systematic strategy was used to locate original research that included 4 electronic databases using the search terms men, young men, male, father, parents, and cancer experience. RESULTS: Sixteen studies met the inclusion criteria. Twelve studies used qualitative methodology, and 4 studies used a quantitative method; no mixed-method studies were found. Of the studies reviewed, 6 focused on the experiences of men but not young men aged 20 to 44 years exclusively, 10 studies had male and female respondents. Analysis revealed 5 themes: (1) manhood in question, (2) the good father or not, (3) family and that special bond, (4) silencing cancer talk, and (5) living with uncertainty. CONCLUSIONS: Young men are building resources while creating family bonds, and they identify themselves through their work. Young men with cancer have needs specific to their gender and cohort. IMPLICATIONS FOR PRACTICE: Methodological and conceptual recommendations are presented. This includes conducting research focusing on this cohort and using a life-course perspective. Understanding the overall experience of this cohort will enable the development of clinical interventions for young men with cancer. Supportive care in a nonthreatening environment is needed to help young men cope with the problems described.

Decision making for mothers with cancer: maintaining the mother-child bond.

PURPOSE: The objective of this study was to explore the process of decision-making in mothers with cancer when they are mothering young children. The purpose of this article is to describe the core category that emerged from the study as well as the conditions precipitating decision making and the consequences of decision making for mothers with cancer. METHODS AND SAMPLE: A qualitative methodology based on the tenets of constructivist grounded theory was used to conduct ten interviews with eight mothers with cancer. KEY RESULTS: Data analysis revealed the core category, the conditions of the decision situation as well as the consequences of decision making. The core category was the meaning that mothers made of decisions, specifically that each decision was made to maintain the mother-child bond. The conditions of the mothers' lives influenced the meaning mothers assigned to decisions. The consequences of decision making were displayed by these mothers through coping strategies to facilitate maintaining the mother-child bond in times of distress. CONCLUSIONS: The conditions of the mothers' lives created a context in which mothers made meaning of decisions. Mothers aimed to maintain their bonds with their children in the decision making process and used various coping strategies as a consequence to distress from decisional situations. The results have implications for future decision making research in cancer care.