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Introduction. This review sought to synthesise the qualitative evidence pertaining to the experiences of myeloma patients and relatives of work, given the distinct symptom burden and illness trajectory. Methods and Designs. CINAHL, Medline, Web of Science, PsychINFO, SocIndex were searched on 22-Apr-2022. No limiters were used for language or date of publication. CASP was used for critical appraisal. An integrative synthesis was conducted to inductively construct analytic themes PROSPERO CRD42022323137. Results. 34 articles were included, published from 2004 to 2022. Nineteen were assessed as having low risk of bias, and four with moderate risk of bias. The following four themes were derived from analysis of the papers: (i) side effects, medicines, and stigma; (ii) relationships; (iii) creation and maintenance of identity; (iv) privilege and income. Conclusion. Myeloma impacts the engagement of patients and relatives in paid and unpaid work, yet very little is currently known on how the cancer impacts these important interdependent systems. Addressing workplace stigma, understanding the role of workplace relationships, the construction of self through work, interpreting data through a lens of life-course and, privilege offer helpful starting points. [ABSTRACT FROM AUTHOR]

Objective. Decision‐making in advanced cancer with a limited prognosis is particularly challenging: constantly evolving therapeutic algorithms with new treatment options that show marginal benefits have to be balanced with end‐of‐life decision‐making. But existing decision support tools for advanced cancer patients are rare, not routinely used in clinical practice and do not sufficiently meet patients' needs. Therefore, our project explores the experienced decision‐making process in advanced lung cancer to derive recommendations for the use of shared decision‐making in this context. Methods. 20 semistructured interviews with lung cancer patients, their relatives, and healthcare professionals were conducted. All data were transcribed verbatim and analyzed with a thematic content analysis. Results. The decision‐making process of advanced cancer patients is mainly characterized by a lack of perceived options. Physicians do not adequately present palliative care as an alternative or additional support for these patients. Being confronted with limited options that only include active cancer treatment patients tend to choose a more paternalistic decision model leaving the treatment decision to their physicians and accepting aggressive treatments uncritically. Conclusion. A paternalistic decision‐making model in advanced cancer may neglect individual wishes, values, and preferences of patients and promote a feeling of powerlessness. Empowerment of these patients is needed with context‐specific SDM tools and trainings of professionals to avoid overtreatment and facilitate the timely integration of palliative care. This trial is registered in DRKS00023674. [ABSTRACT FROM AUTHOR]

Background. During the COVID-19 pandemic, people affected by cancer were in need of information about the virus and about the (self-) management of cancer symptoms and treatment. It is important to understand how patients with cancer navigated through the pandemic and to explore their experience relating to their supportive care needs. Aim. This study aimed to describe the experience of Swiss oncological patients during the COVID-19 pandemic with additional supportive cancer care. Methods. A single-center study was conducted in 2021. Patients with melanoma, breast, lung, or colon cancer who received active systemic anticancer treatment at the time of the COVID-19 pandemic and who were additionally seeing either oncology clinical nurse specialists, integrative medicine physicians, or both were included. We conducted semistructured interviews alongside the patient-reported quantitative assessment of distress and resilience. Thematic analysis was performed for the qualitative data and descriptive statistics for the quantitative data. Results. Eighteen patients with cancer were interviewed. Patients seeing an integrative medicine physician highlighted that they positively felt being addressed as a whole person during the consultations. The oncology clinical nurse specialists were perceived as the first point of contact for the patients and had more time during the pandemic compared to what the patients normally received. In general, patients did not experience delays or disruptions in their cancer treatment. As immunosuppressed and fatigued patients with cancer, they felt supported by the restrictions and hygienic measures. Access to vaccination reassured patients against the risk of infection. These results were reflected in the quantitative data, as we found moderate distress levels (M = 4.1; SD = 2.5) and high resilience scores (M = 7.5; SD = 0.9) in this patient population. Conclusion. During the COVID-19 pandemic, patients with cancer felt particularly supported by integrative medicine and cancer nurse consultations. Secured resources for nursing consultations and integrative medicine services can help to address the supportive care needs of patients with cancer. [ABSTRACT FROM AUTHOR]

Background. Chemotherapy can cause a range of side effects including nausea, vomiting, diarrhea, and infection, which can have a significant impact on an individual's quality of life. Survival outcomes can be impacted when side effects are poorly managed, leading to failure to complete the defined dose of treatment. Objective. This study presents clinicians' experiences with a shared care model involving home-based community nurse (CN) support to improve side-effect management of individuals receiving chemotherapy as an outpatient. Methods. A qualitative study was conducted with CNs, cancer nurses, medical oncologists, and a general practitioner involved in the CN intervention delivered as part of a randomized controlled trial (RCT) aimed at reducing unplanned presentations to hospital of cancer patients receiving outpatient chemotherapy. Semistructured individual and focus group interviews were conducted. Key themes were identified using thematic analysis. Findings. Twenty-three healthcare professionals were interviewed. Three themes were identified: (1) being able to enhance patient-centered care and clinical practice during chemotherapy; (2) importance of effective communication and collaborative relationships between different care settings; and (3) ways to adapt the intervention for implementation in routine clinical practice. Participants reported that it was feasible for CNs to care for this patient group, and their home visits enabled preemptive symptom management. Suggestions to improve and modify the intervention to implement this care model within existing clinical care included a flexible approach, such as a blended delivery with face-to-face visits and telephone calls; a risk- or needs-based approach to prioritize patient groups more likely to benefit from the intervention; and sharing of electronic medical records for more effective collaboration and communication. Conclusions. A CN-delivered shared care model provided a feasible approach to the provision of individualized support for outpatients receiving chemotherapy. This study suggests ways to adapt this care model into existing clinical workflow and structures. This trial is registered with ACTRN12614001113640. [ABSTRACT FROM AUTHOR]

Purpose. This study aimed to study the challenges and ways of coping with living with chronic lymphocytic leukemia (CLL) before the initiation of treatment. Methods. Semistructured interviews were carried out with 8 people living with CLL (4 males and 4 females) who had never received any treatment. Interpretative phenomenological analysis was utilized for the analysis of the data. Results. The following three themes were developed: (1) "Still waters run deep" highlights the contrast between living with minimal symptoms while experiencing high anxiety for the future, (2) "Surviving uncertainty" portrays participants' supportive networks, communication challenges, and internal coping mechanisms to face the threatening overtones of CLL, and (3) "Turning over a new leaf" delineates participants' realization of life's finiteness and the way this acts as a nudge for psychological growth. Conclusion. Despite the limited physical discomfort, the CLL diagnosis and the watch-and-wait phase bring about psychological distress, which drives meaning-making efforts and an array of coping mechanisms, potentially leading to posttraumatic growth processes for people living with CLL. [ABSTRACT FROM AUTHOR]

Background. There are many different haematological malignancy subtypes. Most follow chronic pathways that are uncertain and unpredictable, which may lead to feelings of anxiety and distress. The provision of information can ameliorate such difficulties, but patients are known to have unmet needs in this regard. The aim of this study is to explore experiences of information sharing among patients with chronic blood cancers and the factors impacting this process. Methods. The study is set within a UK cohort of blood cancer patients, where care is provided across 14 hospitals according to national clinical guidelines. Purposive sampling was used to identify expert participants (based on experience), and in-depth qualitative interviews were conducted with 35 patients, 10 with a relative present. The study was intended to inform practice and utilised qualitative description, with thematic content analysis and systematic data coding. Results. Experiences of information sharing varied. Most patients described this positively, but not all. Several barriers and facilitators were identified, which are discussed within five themes: (1) shock affects ability to process information, (2) the importance of time to facilitate information exchange, (3) personal relationships have an impact on meeting information needs, (4) HCP interpersonal skills are central to good information sharing, and (5) communication skills and terminology. Conclusions. Patients with chronic blood cancers prefer to engage in information sharing when they are not in a state of shock, and when they have adequate time to process material that is effectively and sensitively delivered, by HCPs they know and trust. [ABSTRACT FROM AUTHOR]

Objective. Lung cancer is commonly diagnosed and is the leading cause of cancer-related death, morbidity, and burden of disease globally. There is an ongoing need to ensure patients receive optimal evidence-based care and to identify and reduce unwarranted clinical variation to achieve best possible outcomes. The EnRICH program has developed evidence-based clinical quality indicators to measure processes and outcomes of lung cancer care, and a feedback dashboard to report comparative performance data, which highlight variation in both care and outcomes. The aims of this study were to evaluate the acceptability and utility of the quality indicators and feedback dashboard and identify benchmarks for performance monitoring and priorities for future quality improvement interventions to address observed clinical variation. Method. Clinicians from lung cancer multidisciplinary teams (MDTs) at six tertiary clinical sites across regional and metropolitan NSW were invited to participate in evaluation interviews. Interviews were conducted via videoconference and recorded with consent. Data were analysed thematically using framework methods. Results. Thirteen clinicians participated in interviews, with representation from each clinical site and specialty. All participants considered the quality indicators to be clinically meaningful. Three main themes were identified: (i) the importance of timely, local, quality data; (ii) implementable versus nonimplementable clinical practice changes; and (iii) the need for ongoing performance monitoring. Clinicians prioritised two areas of unwarranted clinical variation that could be immediately addressed through easily implementable quality improvement interventions to positively impact patient care: (i) a process to ensure that all stage III patients are discussed by a multidisciplinary team prior to commencing treatment; (ii) a referral pathway to palliative care within eight weeks for patients diagnosed with stage IV disease. The importance of lung cancer nurse specialists for improved care coordination was highlighted. Conclusion. Clinicians would like to continue to receive close-to-real-time quality data for ongoing performance monitoring to identify and address unwarranted clinical variation. [ABSTRACT FROM AUTHOR]

Objective. Desmoid-type fibromatosis (DF), a rare benign tumour with similar treatment options to cancer, can adversely impact people's lives, yet little qualitative research addressing patients' experiences of DF exists. The present study aimed to understand the day-to-day experiences of individuals with DF and their experiences of healthcare. Methods. Semistructured, qualitative interviews were conducted by phone or email with 20 participants. Inductive thematic analysis was performed, structured with the Framework approach. Results. Many participants reported delays in diagnosis. This was attributed to them ignoring their symptoms or to healthcare professionals lacking awareness of DF. Healthcare experiences varied, with some participants expressing good support. Others felt unsupported, viewing staff as dismissive of difficulties. Comparisons between DF and cancer were commonly discussed. Some participants felt relieved that they did not have cancer; others perceived that their needs were secondary to cancer patients and believed they were treated as less important. Participants discussed negative impact of DF on psychosocial well-being. Chronic pain and activity limitations seemed to impact mood and relationships. Conclusion. Greater awareness and understanding of DF by health professionals may help to reduce diagnostic delay and improve support. Individuals may benefit from being treated by specialist DF teams. [ABSTRACT FROM AUTHOR]

Objective. Research reporting the unmet needs of individuals with haematological cancers under watch-and-wait is scarce, despite reports of elevated levels of psychological distress. This qualitative study aimed to explore the psychosocial needs of these individuals, and when these were met, if so at all. Methods. A longitudinal design using semistructured interviews was used. Individuals with a diagnosis of haematological cancer living under watch-and-wait were recruited through online support groups. Participants were each invited to two semistructured interviews, six months apart. Interviews took place in March 2022 and September 2022 and were therefore in the context of the COVID-19 pandemic. All interviews were recorded and transcribed verbatim. Reflexive thematic analysis and pattern-oriented longitudinal analysis were used to analyse the data. Results. Of the fifteen participants interviewed initially, twelve attended a second interview. The sample was predominantly White and female. Across participants and time points, a theme was generated that individuals experienced a "Psychological battle of watch-and-wait." Under this overarching theme, four themes were constructed: "Understanding the impossible: Cancer that does not require treatment;" "Sense of abandonment under watch and wait;" "The importance of peer connection;" and "Trying to live after COVID-19." The themes were understood to predominantly represent needs for information, communication, peer support, and emotional support and were most often met when individuals engaged with relevant charities. Conclusion. People living with haematological cancer under watch-and-wait may be at risk of having unmet needs across domains, and without support, these needs will likely remain unmet over time. The findings add to the growing literature base how Oncology and Haematology services can holistically support individuals with indolent cancers to live well alongside their diagnosis. [ABSTRACT FROM AUTHOR]

Background. Family caregivers in charge of patients with advanced cancer play an essential role. The psychosocial cost of these caregiving activities has been studied, and psychosocial interventions have been developed to improve the quality of life of family caregivers. A deeper understanding of caregivers' burden is essential in order to enhance the benefits of these interventions. The aim of this study was to explore the socioeconomic and cultural factors responsible for shaping the complex personal experience of family caregiving and to analyse the moral dimensions of the caring experience so as to understand its effects on family caregivers more clearly. Materials and Methods. A qualitative study based on in-depth interviews was conducted with patients with advanced cancer (n = 20) and their family caregivers (n = 19) from 2017 to 2020. These interviews were analysed using an inductive approach and an iterative procedure. A thematic analysis was then performed using Tronto's "ethic of care" framework in order to identify the various levels of responsibility and the relationships and effects involved. Results. Providing patients with advanced cancer with informal care is highly valuable work requiring various moral qualities, including attentiveness, responsibility, competence, and responsiveness. The mental load resulting from the moral aspects of care results from the cumulative effects of carers' attentiveness and the responsibilities they have taken on. Conclusion. The present findings could guide healthcare professionals to develop best practice resources and guidelines in order to alleviate the hitherto underestimated effects of caring and promote a coordinated public health approach addressing the needs of caregivers. These efforts are particularly important as contemporary health policies tend to promote the shift from inpatient to outpatient treatment, which increases the importance of informal caregiving and the burden involved. [ABSTRACT FROM AUTHOR]

Objective. Those closest to the patients with low-grade glioma (LGG) often become informal caregivers (ICs). Caregiving demands can impact ICs' wellbeing, meaning they themselves may require support. We explored the nature and quality of support from informal networks for ICs of LGG patients. Methods. In this cross-sectional qualitative study, semistructured interviews were conducted with individuals from the United Kingdom who currently, or in the past five years, informally cared for someone diagnosed with an LGG. Interviews explored ICs' experiences of receiving support from informal networks. Thematic analysis was undertaken. Results. Nineteen ICs were interviewed (mean age 54.6 years; 5 males, 14 females). ICs received multiple forms of support from their informal networks: emotional (e.g., "opportunities to talk"), instrumental (e.g., "opportunities for relief"), information (e.g., "information from network contacts"), and appraisal (e.g., "comparisons with similar others"). Networks comprised strong/familiar (e.g., close friends) and weaker/unfamiliar (e.g., other ICs) ties. Supportive networks were perceived to help protect ICs' wellbeing. Participants perceived challenges such as poor understanding and unsolicited advice to weaken the quality of support. Conclusion. Informal networks can provide wide-ranging support for ICs of the LGG patients. Different supports may be sought or provided from different contacts, highlighting the importance and value of extended networks. [ABSTRACT FROM AUTHOR]

Background. Strong evidence supports the beneficial impact of exercise on cancer patients. However, the provision of exercise programs in Germany is highly heterogeneous. Therefore, the network OnkoAktiv (OA) enables patient consultations and referrals from coordinating regional OA centers (RE) into community-based exercise programs (CBEP). Objective. The aim of this study was to identify barriers and facilitators for the implementation of OA network structures from the perspective of RE and certified CBEP. Methods. This evaluation was executed in a sequential mixed methods design. We conducted 16 qualitative interviews with each leader in RE and the certified CBEP. Then, 89 certified CBEP were invited to a quantitative, cross-sectional survey. Results. We identified 11 facilitators each for RE and certified CBEP, 7 barriers for RE and 5 for certified CBEP. Barriers dealt with, for example, financing OA network structures, a lack of knowledge of exercise trainers, inadequate patient referral, and missing collaborations by healthcare professionals (HCPs). Most of the named facilitators were adequate internal organizational resources, support and reachability of OA staffs, and collaboration with HCPs. Conclusion. Our findings indicate different challenges for the implementation of OA network structures. Future implementation efforts should consider the evaluation of individual barriers and the development of specific solutions. [ABSTRACT FROM AUTHOR]