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.

Priorities for caregiver research in cancer care: an international Delphi survey of caregivers, clinicians, managers, and researchers.

PURPOSE: With an increased investment in psychosocial caregiving research, it becomes critical to establish the need for data of key stakeholders and future strategic directions. The purpose of this international Delphi study was to engage caregivers, clinicians, researchers, and managers to identify priority topics for caregiver research in cancer care. METHODS: A three-round, online Delphi survey took place. In round 1, stakeholders generated caregiver research topics by answering an open-ended question. Content analysis of stakeholders' answers identified topics to be included in the round 2 survey to rate their importance. The round 3 survey included topics with less than 80% agreement for stakeholders to reconsider in light of other participants' responses. RESULTS: In round 1, eighty-six topics were generated by 103 clinicians, 63 researchers, 61 caregivers, and 22 managers and grouped into 10 content areas: impact of cancer, support programs, vulnerable caregivers, technology, role in health care, caregiver-centered care, knowledge translation, environmental scan, financial cost of caregiving, and policy. Across rounds 2 and 3, nine topics achieved consensus for all stakeholder panels (e.g., home care interventions), with three of these emphasizing more research needed on the financial impact of informal caregiving (e.g., financial impact of "burnout" for caregivers and society). Of note, vulnerable caregivers and use of technology were content areas prioritized particularly by managers and researchers, but not caregivers. CONCLUSION: By establishing a confluence of perspectives around research priorities, this study ensures the interests of key stakeholders are integrated in strategic directions, increasing the likelihood of research capable of influencing practice, education, and policy.

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.

Prioritizing supports and services to help older adults age in place: A Delphi study comparing the perspectives of family/friend care partners and healthcare stakeholders.

BACKGROUND: Aging in place (AIP) is a policy strategy designed to help older adults remain in their community. While planners internationally have modified aspects of the older adult care continuum (e.g., home care, assisted living, nursing homes) to facilitate AIP, further improvements to community-based supports and services are also required. This study compared and constrasted the community-based factors (e.g., supports, services and personal strategies or characteristics) that family/friend care partners and healthcare stakeholders (i.e., planners/providers) view as most important to help older adults successfully AIP. METHODS: An initial list of factors shown to influence AIP was created from the academic literature. These factors were used to develop a Delphi survey implemented separately on care partners and healthcare stakeholders. Respondents rated the importance of each factor using a 10-point Likert Scale (1 = not important; 10 = absolutely critical). Consensus in each group was defined when at least 80% of participants scored a factor ≥8 ("very important"), with an interquartile range ≤2. Respondents suggested additional factors during Delphi round one. RESULTS: Care partners (N = 25) and healthcare stakeholders (N = 36) completed two and three Delphi rounds, respectively. These groups independently agreed that the following 3 (out of 27) factors were very important to help older adults age in place: keeping one's home safe, maintaining strong inter-personal relationships, and coordinating care across formal providers. While healthcare stakeholders did not reach consensus on other factors, care partners agreed that 7 additional factors (e.g., access to affordable housing, having mental health programs) were important for AIP. CONCLUSIONS: Compared to healthcare stakeholders, care partners felt that more and diverse community-based factors are important to support older adults to successfully AIP. Future research should replicate these findings in other jurisdictions, examine the availability and accessibility of the priority factors, and develop sustainable solutions to enhance their effectiveness.

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.

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

REVIEW QUESTION/OBJECTIVE: What are the psychosocial experiences of women with breast cancer across the lifespan, including similarities and differences in the psychosocial experiences of younger, middle-aged and older women with breast cancer? BACKGROUND: The experience of a life threatening illness, such as cancer, requires a person to consider an array of emotional, medical, social and existential demands. Specific to breast cancer, research shows that the experience of diagnosis and treatment of breast cancer may result in considerable distress.It is also known that a diagnosis of invasive breast cancer propels women into a time of uncertainty, that brings fear and emotional work. This disease oftentimes challenges a woman's identity, self-esteem, body image and relationships. However, even with these commonly felt distresses, most women adjust well to a breast cancer diagnosis and the treatments experienced, particularly if they do not experience a recurrence of cancer. Protective factors for distress include supportive care networks, such as family and support groups and professional resources provided by clinical staff, such as timely referrals to specialized services.Although most women adjust well to breast cancer, understanding distressing experiences among this population is crucial because, when experienced, the negative psychosocial impacts can be significant. Women who do experience distress due to breast cancer are at a risk of distress accompanying them through the breast cancer journey and impacting their long-term quality of life.Although literature suggests that the psychosocial experience of a breast cancer diagnosis may be different across the lifespan, less is known about the similarities and differences in the psychosocial experience between younger and older women with breast cancer. However, this studyexamines the experience of one age group and no comparisons between different age groups in this or other studies have been found at this time. Among what is known, younger women with breast cancer are at a heightened risk of anxiety and depression in comparison to older women and younger women experience more worries about their careers and finances than older women. There is also evidence that young women perceive their quality of life to be lower than older women as a result of breast cancer. This may be attributed to poorer emotional wellbeing, specific cancer-related concerns, depression and intrusive thoughts for this younger group. On the other hand, older women with breast cancer experience more health problems than younger women in survivorship, independent of receiving chemotherapy. In general, older breast cancer survivors experience overall better quality of life and mental health than their younger counterparts, but they tend to have poorer physical health and health-related quality of life due to comorbid conditions. Another risk factor for psychosocial distress is low income, which may be particularly salient for older women who are more likely to be on a fixed income than their younger counterparts. However, literature suggests that a higher degree of psychosocial adaptation can be found among older women with breast cancer because these women have had more life experience, including prior experiences with the health care system, witnessing the diagnosis of others with cancer, and having few competing demands. It is thought that these factors contributed to coping and successful adaption to the disease among older women.When studying how women acclimatize to breast cancer in the early stages of the cancer journey, it has been found that the main concerns for these women were concepts connected to identity. Breast cancer threatens women's self-integrity and the restructuring of life after a cancer diagnosis calls for the new experiences and feelings to be integrated into a revised self-narrative, sometimes referred to as 'meaning-making'. Little is understood about the differences between younger and older women in their construction of identity or how they make meaning in the context of breast cancer. What is known is that, for younger women, the diagnosis of cancer is shocking, and is an opportunity to contemplate mortality. Older women are more likely to approach their diagnoses in a matter-of-fact manner associated with the expected process of aging.The concept of body image can be found as a focus of breast cancer literature which describes the level of investment women put into their body in order to help them determine their wellbeing. The disruption of body image in breast cancer is attributed to hair loss, as well as changes in the breast and weight. Studies show younger women do seek normality in their breasts following mastectomy, and seek breast reconstruction more often than older women. Regarding older women with breast cancer, little is known about the experience of specific body image concerns, such as short- or long-term changes in the body due to treatment. It is known that older women with cancer experience body dissatisfaction and may even experience higher levels of dissatisfaction than younger women, possibly due to more persistent problems with the physical functioning of their body.It is also known that the diagnosis and treatment of breast cancer affect relationships including spousal relationships, and relationships with children and older parents. As a woman with breast cancer experiences vulnerabilities, so too does her family. Spouses and partners of women with breast cancer work to adjust roles and to balance added household responsibilities, particularly during times of treatment. Children of women with breast cancer are impacted by the level of interaction with their mothers, with increased positive mother-child interactions associated with the increased wellbeing of family members. On the other hand, children are impacted negatively by a negative change in the mother's mood or marital tension. Lastly, parents of women with breast cancer are also affected since, they too, need to come to terms with the early timing of their daughters' diagnoses.Family relationships are vital for women with cancer because these relationships provide a high degree of social support, including emotional, tangible, informational and experiential support. Literature shows family relationships are improved for both younger and older breast cancer survivors. However, the intimate relationships of younger women are more likely to be strained in comparison to the intimate relationships of older women in the context of breast cancer survivorship. Also, younger adults with cancer experience increased loneliness, and a greater sense of isolation from peer and support networks than older adults perhaps because they perceive themselves to be different from their peers as a result of cancer.This incomplete understanding of the psychosocial experience of women with breast cancer across the lifespan requires an urgent need for research to facilitate a greater understanding of the psychosocial needs of these women. To allow for the effective delivery of appropriate cancer care support to these populations, a greater understanding of the unmet needs of these women must occur, including an understanding of the similarities and differences of younger and older women with this disease. A synthesis of literature from multiple contexts of the psychosocial experiences of younger and older women with breast cancer will add to the understanding of the experiences of these women. No systematic review on this topic was found when searching Cochrane Database of Systematic Reviews, PROSPERO and the JBI Database of Systematic Reviews and Implementation Reports.

Impact of feeding tubes on prospective functional outcomes in patients with locally advanced head and neck cancer undergoing radiation therapy.

PURPOSE: The optimal timing of enteral feeding tube (FT) insertion during radiation therapy for head and neck cancer remains controversial. This study compares prospectively collected functional outcomes for prophylactic versus reactive insertion. METHODS AND MATERIALS: Patients undergoing primary radiation therapy for stage III-IV head and neck cancer between 2004 and 2009 underwent functional outcome assessment at baseline and 3, 6, 12, 24, and 36 months posttreatment. Instruments included the Royal Brisbane Hospital Outcome Measure for Swallowing, Performance Status Scale for Head and Neck Cancer Patients, and modified Edmonton Symptom Assessment Scale. Multivariable regression analysis was conducted to determine the impact of FT use on functional outcomes. RESULTS: A total of 178 patients were assessed with a median follow-up of 36.4 months. Use of an FT was prophylactic in 92 and reactive in 24; no tube was used in 62 patients. Compared with prophylactic placement, reactive FT use was not associated with worse function for Performance Status Scale for Head and Neck Cancer Patients Normalcy of Diet for soft foods (adjusted odds ratio [AOR] 1.16, P = .85) or Eating in Public (AOR 1.87, P = .31). Similarly, there were no differences in the Royal Brisbane Hospital Outcome Measure for Swallowing for modified diet (AOR 1.27, P = .7) or FT dependence (AOR 3.01, P = .2). CONCLUSIONS: There were no significant differences in long-term swallowing function between patients who received a prophylactic versus reactive FT.

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.

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.