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Objective: This survey aimed to analyse healthy citizens (HC), cancer patients and their caregivers (CP&CG) perception about cancer care among six different Italian regions. Methods: The survey for HC was conducted by a multinational market research institute (IPSOS) through a computer‐assisted web interviewing system, using a dataset of people who had consented to be interviewed for previous studies. CP&CG were interviewed by patient advocates using paper questionnaires. Results: HC completed 1831 questionnaires between May and June 2019; CP&CG filled 1779 questionnaires between May and October 2019. 55% of all interviewees felt they were adequately informed about cancer, with no disparities between regions. Overall, population was satisfied with the National Health Care System (HCS), CP&CG more than HC, probably for their personal positive experience. There were different satisfaction levels between regions regarding components of the pathway of care, but agreement about health workers' 'human component'. Forty‐three per cent of the interviewed were informed about genetic tests, 47% about innovative drugs. The percentage was greater among CP&CG (51% and 61% respectively). Conclusions: Italian people were overall satisfied with HCS although with significant different perceptions between regions. Moreover, some critical issues were highlighted as low adherence at screening invitation and genetic tests. Understanding people's perception regarding HCS is crucial to support health policies and to improve the performance of HCS. [ABSTRACT FROM AUTHOR]

Personalising aftercare for curatively treated breast cancer patients is expected to improve patient satisfaction with care. A patient decision aid can support women in making decisions about their aftercare trajectory, but is currently not available. The aim of this study was to assess the needs of patients and health professionals with regard to an aftercare decision aid to systematically develop such a decision aid. Focus groups with patients and individual interviews with health professionals were digitally recorded and coded using the Framework analysis. Although most patients felt few aftercare options were available to them, health professionals reported to provide various options on the patients' request. Patients reported difficulty in expressing their need for options to their health professional. Although most patients were unfamiliar with decision aids, the majority preferred a paper‐based patient decision aid, while most health professionals preferred an online tool. The practical implications for the intended patient decision aid are: that a digital tool with paper‐based element should be developed, the patient decision aid should facilitate both rational and intuitive processes and should provide insight in patients' preferences concerning aftercare to discuss these explicitly. [ABSTRACT FROM AUTHOR]

Objective: Currently, there are no self‐management resources in Australia that support both Chinese immigrant patients affected by cancer and their caregivers. This paper reports on the development and acceptability assessment of a self‐management intervention (WeCope) in terms of its scope, social and cultural relevance and sensitivity. Methods: Using a community participatory approach in this qualitative study, patients, caregivers and community members took part in semi‐structured focus groups or interviews in Cantonese, Mandarin or English to develop and provide feedback on the acceptability of 'WeCope'. Content analysis was performed on the transcripts using inductive (codes) and deductive (themes and categories) methods. Results: Patients (n = 17), caregivers (n = 10) and community members (n = 2) participated. Four themes were developed, guided by the framework of cultural sensitivity in interventions: (1) content preference and satisfaction; (2) perceived usefulness and usability; (3) cultural relevance and acceptability; and (4) layout and presentation. Participants most commonly wanted more information about treatment‐related issues (n = 14) and available support services (n = 14). Conclusion: Chinese patients and caregivers expressed overall satisfaction with the WeCope resource and provided suggestions for improvement, including provision of more treatment‐related information and contact details for available support while reducing the overall resource length. [ABSTRACT FROM AUTHOR]

Objective: Colorectal cancer (CRC) is the fourth most common cancer in the UK. It is estimated that around 50% of the disease burden is caused by lifestyle factors. This paper evaluates the impact of a training programme for Specialist Screening Practitioners (SSPs) on knowledge of CRC risk reduction and subsequent health promotion activities. Method: Attendees (n = 21) were invited to participate in semi‐structured qualitative telephone interviews developed in conjunction with programme organisers. An independent researcher undertook the interviews on the perceived impact of the training on knowledge about risk reduction, communicating health promotion messages and working practices. Results: Ten interviews were conducted. The programme was perceived to be successful in increasing knowledge about CRC risk and methods to promote behavioural change. Participants questioned the suitability of the endoscopy setting to communicate health promotion messages given patient anxiety pre‐investigation and post‐investigation elation after negative results. Key barriers to health promotion activities were time, hesitancy over raising issues that could not be easily discussed and scepticism about the ability of older adults to change their lifestyle. Conclusions: Training on CRC risk reduction increased knowledge and behaviour change skills among SSPs. Further work is needed to explore opportunities to optimise the screening environment for health promotion activities. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this paper was to identify current barriers, facilitators and experiences of raising and discussing palliative care with people with advanced cancer. Methods: Semi‐structured interviews were conducted with patients with advanced cancer and healthcare professionals (HCPs). Patients were included who had and had not been referred to palliative care. Transcripts were analysed using framework analysis. Results: Twenty‐four patients and eight HCPs participated. Two overarching themes and five sub‐themes emerged: Theme one—referral process: timing and triggers, responsibility. Theme two—engagement: perception of treatment, prognosis and palliative care, psychological and emotional preparedness for discussion, and understanding how palliative care could benefit present and future care. Conclusion: There is a need to identify suitable patients earlier in their cancer trajectory, address misconceptions about palliative care, treatment and prognosis, and better prepare patients and HCPs to have meaningful conversations about palliative care. Patients and HCPs need to establish and communicate the relevance of palliative care to the patient's current and future care, and be clear about the referral process. [ABSTRACT FROM AUTHOR]

Objective: An increasing number of people living with HIV are living longer and experiencing a dual diagnosis of HIV and cancer. Little is known of their experience and quality of care. This paper presents the findings of a study exploring experiences of cancer care, from the perspectives of both patients and healthcare professionals. Methods: Thematic analysis of participant narratives provided in longitudinal, semi‐structured interviews with 17 people, recruited from three London sites between 2015 and 2017. Focused ethnography comprising 27 hr of participant observation and seven semi‐structured interviews with healthcare professionals. Results: Both HIV and cancer have a powerful, combined impact; in cancer, the impact is visible; in HIV, it is generally hidden. Patients and staff experienced particular challenges in the cancer setting. Patients felt responsible for their HIV management and described being excluded from clinical trials. Both staff and patients encountered difficulties around the management of information relating to HIV. Conclusion: This dual diagnosis has a profound and negative effect on patients' experiences and potential outcomes. Improvement depends on interventions that acknowledge the shared social narrative and impact of HIV‐related stigma so that this burden is not carried by the patient alone. [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]

Migrant well-being can be strongly influenced by the migration experience and subsequent degree of mainstream language acquisition. There is little research on how older Culturally And Linguistically Diverse ( CALD) migrants who have 'aged in place' find health information, and the role which digital technology plays in this. Although the research for this paper was not focused on cancer, we draw out implications for providing cancer-related information to this group. We interviewed 54 participants (14 men and 40 women) aged 63-94 years, who were born in Italy or Greece, and who migrated to Australia mostly as young adults after World War II. Constructivist grounded theory and social network analysis were used for data analysis. Participants identified doctors, adult children, local television, spouse, local newspaper and radio as the most important information sources. They did not generally use computers, the Internet or mobile phones to access information. Literacy in their birth language, and the degree of proficiency in understanding and using English, influenced the range of information sources accessed and the means used. The ways in which older CALD migrants seek and access information has important implications for how professionals and policymakers deliver relevant information to them about cancer prevention, screening, support and treatment, particularly as information and resources are moved online as part of e-health. [ABSTRACT FROM AUTHOR]

Cervical cancer is still a public health problem worldwide, and almost 80% of cervical cancer cases occur in developing countries. In Libya, cervical cancer ranks as the third most frequent cancer among women. This paper presents the results of a study conducted to assess women's awareness of the symptoms and risk factors of cervical cancer and to identify socio‐demographic variations in their level of awareness. A population‐based cross‐sectional survey was carried out in the city of Az‐Zawiya, Libya from 1 January 2014 to 31 August 2014. A total of 412 adult women of the reproductive age (18–50 years) were selected randomly from the population registry. A face‐to‐face interview was conducted, using a validated Arabic version of the Cervical Cancer Awareness Measure (CAM) questionnaire. More than 63% of respondents were unable to recall any warning signs and 66.7% were unable to recall any risk factors. Respondents scored considerably higher on recognition rather than on recall for both the warning signs and the risk factors of cervical cancer. Recall and recognition of cervical cancer symptoms and risk factors were higher in women who had a higher level of education and who earned a higher income. However, overall awareness of cervical cancer symptoms and risk factors among women in the city Az‐Zawiya in Libya was low. The findings underline the need to improve public awareness of cervical cancer and its prevention by using several health promotion strategies. [ABSTRACT FROM AUTHOR]

Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this meaning-giving process interacts with cultural dominant stories on cancer and dying. The presented data come from 16 open-ended face-to-face interviews with palliative paediatric patients, their parents and physicians. The interviews were carried out in eight paediatric oncology centres in Switzerland. Data analysis followed Arthur Frank's dialogical narrative analysis. Quest narratives were relatively rare compared to both chaos and restitution stories. All participants welcomed chaos stories as a liminal haven between quest and restitution. The possibility that the child could die was either ignored or briefly contemplated, but then immediately pushed away. Except for one patient, children never directly addressed the topic of death. The way in which death was presented raises important questions about how the social discourse on dying is framed in terms of choice, autonomy and individuality. This discourse not only determines the way in which children and adults relate to the minor's death, it also constitutes an obstacle to children's participation in decision-making. [ABSTRACT FROM AUTHOR]

This paper reports finding from a nested qualitative study designed to elicit the views and perceptions of those who participated in a randomised controlled feasibility trial testing a non-pharmacological intervention, Respiratory Distress Symptom Intervention (RDSI), for the management of the breathlessness-cough-fatigue symptom cluster in lung cancer. Semi-structured interviews were conducted with 11 lung cancer patients, three caregivers and seven researchers involved in recruitment, consent, RDSI training and delivery and participant follow-up. Thematic analysis identified key considerations including: the importance of informed consent emphasising commitment to completion of paperwork and raising awareness of potential sensitivities relating to content of questionnaires; ensuring screening for the presence of symptoms reflects the language used by patients; appreciation of the commitment required from participants to learn intervention techniques and embed them as part of everyday life; conduct of interviews with patients who decline to participate; and conduct of serial interviews with those receiving RDSI to further inform its routine implementation into clinical practice. This study will inform the development of a fully powered follow-on trial testing the hypothesis that RDSI plus usual care is superior to usual care alone in the effective management of this symptom cluster in lung cancer. [ABSTRACT FROM AUTHOR]

e- TC is an online intervention designed to address common psychosocial concerns of testicular cancer survivors. It aims to reduce anxiety, depression and fear of cancer recurrence by providing evidence-based information and psychological intervention. This paper details the development and pilot testing of e- TC. During pilot testing, 25 men (with varying psychological profiles) who had completed treatment for testicular cancer, 6 months to 5 years ago (which had not recurred), used e- TC over a 10-week period and provided quantitative and qualitative feedback on the feasibility and acceptability of the programme. Six men also completed a qualitative interview to provide detailed feedback on their experiences using e- TC. Fourteen men (56%) completed at least 80% of the programme. Participants reported a high level of satisfaction with the programme. Men's limited time was a barrier to programme use and completion, and participants suggested that men with a more recent diagnosis and a higher level of distress may be more likely to engage with the programme. e- TC appears to be a feasible and acceptable online intervention for survivors of testicular cancer. Findings from this study are currently being used to refine e- TC and guide the design of a larger efficacy study. [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]

ROWLANDS S. & CALLEN J. (2013) European Journal of Cancer Care 22, 20-31 A qualitative analysis of communication between members of a hospital-based multidisciplinary lung cancer team The aim of the study was to explore how patient information is communicated between health professionals within a multidisciplinary hospital-based lung cancer team and to identify mechanisms to improve these communications. A qualitative method was employed using semi-structured in-depth interviews with a representative sample ( n = 22) of members of a multidisciplinary hospital-based lung cancer team including medical, nursing and allied health professionals. Analysis was undertaken using a thematic grounded theory approach to derive key themes to describe communication patterns within the team and how communication could be improved. Two themes with sub-themes were identified: (1) characteristics of communication between team members including the impact of role on direction of communications, and doctors' dominance in communications; and (2) channels of communication including, preference for face-to-face and the suboptimal roles of the Multidisciplinary Team Meeting and the hospital medical record as mediums for communication. Traditional influences of role delineation and the dominance of doctors were found to impact on communication within the multidisciplinary hospital-based lung cancer team. Existing guidelines on implementation of multidisciplinary cancer care fail to address barriers to effective team communication. The paper-based medical record does not support team communications and alternative electronic solutions need to be used. [ABSTRACT FROM AUTHOR]

Websites offer new opportunities to provide health-related information to rural communities. However, how acceptable they are to this population is unknown. This paper describes the consumer-led development of a website that provides rural-specific information on psychosocial care for rural South Australians affected by cancer, and examines its acceptability to users. The Country Cancer Support website was developed with people affected by cancer living in rural South Australia ( N = 11), using a Participatory Action Research Framework and evidence-based behaviour change strategies. There were 32,389 visits in the first 3 years. An online survey ( N = 111) revealed that users found the website easy to use, helpful and relevant. Most rural cancer patients and supporters (98.11%) believed it had been written by people who understood what they were going through. Patients and supporters for whom it was relevant, reported feeling more motivated and confident in accessing psychosocial support services in their rural area (66.67%) and/or capital city (67.65%) and/or in travelling for medical treatment (75.86%). Many also felt less isolated (73.33%) and/or distressed (53.57%). All health professionals reported gaining new knowledge. This study shows that carefully designed websites can successfully address rural populations' health information needs and increase intentions to access psychosocial support. [ABSTRACT FROM AUTHOR]

Despite advances in surgical treatments and the availability of more conservative treatment options, women treated for vulval cancer still experience significant complications such as urinary incontinence, lymphoedema, pruritus, sexual and intimacy issues. These issues can profoundly impact a woman's quality of life. The subjective experience of women diagnosed and treated for vulval cancer in the literature is limited, possibly due to its comparable rarity to other gynaecological and female cancers and because it was traditionally seen mainly in the elderly female population. Nonetheless, younger women are also being diagnosed with vulval cancer. This paper reports the findings from a qualitative study about twelve women's experiences with vulval cancer from diagnosis, through treatment and recovery. Women's feelings of isolation, their unmet information and support needs, physical concerns arising from vulval cancer, particularly after surgery, and the consequences for their body image and intimate relationships with partners, were highlighted within the data. The central findings from this study emphasise the need for further research to develop appropriate interventions for women with vulval cancer. It also highlights opportunities to improve clinical practice into the supportive care of women with this isolating disease. [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]

We conducted in-depth interviews with 20 women living with breast cancer and invited them to take part in a drawing method. In this paper, we discuss the lived experiences and meaning-making of breast cancer among women in southern Thailand. Our data revealed that the diagnosis of breast cancer generated numerous emotional responses. However, after the initial shock, most women started to accept their reality. The acceptance of their breast cancer played an essential role in the meaning-making discourse because it assisted the women to be able to sustain the equilibrium of their emotional well-being. Meaning-making and the Buddhist belief about bad karma was a prominent theme. The belief that adversities in life were the result of bad deeds that one had committed to others in the past not only helped the women to accept their fate but also to deal with their life situations better. Our findings suggest that these women act in their own agencies to counteract any negativity they might encounter from their breast cancer trajectory. It provides a theoretical understanding about the ways Thai women deal with their breast cancer which can be adopted as a means to provide culturally sensitive care for women with breast cancer in Thailand and elsewhere. [ABSTRACT FROM AUTHOR]

The cancer needs of people with intellectual disabilities are increasingly being debated. This paper explores the views and experiences of paid- and family-carers when supporting women with intellectual disabilities through breast screening. An ethnographic approach was drawn on and purposive sampling methods were employed. One-to-one semi-structured interviews with 13 carers (10 paid-carers, three family-carers) were undertaken and supported by periods of focused observation on behaviour related to breast awareness and breast screening. Findings indicated that most women with intellectual disabilities needed some support but the quality and quantity of support depended upon both the woman's level of intellectual disability and who was supporting them. In terms of breast screening, the findings suggested that the women were potentially being let down at all the different stages of the breast screening process, from the arrival of the invitation letter to the experience of having a mammogram. The conclusion drawn was that there was evidence of equality of service provision but inequality of service delivery and uptake. [ABSTRACT FROM AUTHOR]

An increasing number of patients are confronted with breast cancer (BC) and functional limitations after treatment. Occupational therapy (OT) is successful in return to work (RTW), but not yet available for BC patients. This paper explores experts' opinions on OT interventions for RTW in BC patients in the Belgian context. Primary data were topic-interviews with all heads of OT departments in Flemish University Hospitals ( n = 5). Secondary data were four focus group interviews with care professionals in oncological rehabilitation ( n = 41). All data were transcribed and thematic analysis was used. Integrated in multidisciplinary teamwork, OT interventions should have a holistic and client-centred approach, start early in the rehabilitation process, include workplace visits and contacts with relevant stakeholders, and use goal setting to start up tailor made rehabilitation, linking assessment of abilities and work. Occupational therapists are regarded as professionals who can effectively answer BC patients unmet needs regarding RTW due to their skill to bridge between care and workplace. According to the experts, OT interventions supporting RTW in BC patients are useful when integrated in regular healthcare. They agree on the components but organisational barriers should be removed, for example not providing reimbursement for including this type of support trough healthcare insurance. [ABSTRACT FROM AUTHOR]

Prostate cancer impacts on the daily lives of men, particularly their physical and emotional health, relationships and social life. This paper highlights how men cope with disease and treatment and the strategies they employ to manage their diagnosis alongside daily life. Twenty-seven men were interviewed at different stages in their disease pathway: nine men prior to radiotherapy, eight men at 6-8 months post radiotherapy and 10 men at 12-18 months post radiotherapy. A grounded theory approach was used to collect and analyse the data. Regardless of the point at which they were interviewed four areas emerged as important to the men: the pathway to diagnosis; the diagnosis; the impact of prostate cancer and its treatment on daily life; and living with prostate cancer. Prostate cancer was diagnosed using the prostate-specific antigen ( PSA) test, rectal examination and biopsy. Many men did not understand the consequences of a high PSA reading before they undertook the test. Painful investigative biopsies were viewed as the worst part of the disease experience. Radiotherapy was considered less invasive than other treatments, although preparatory regimes were associated with stress and inconvenience. Men used various strategies to deal with treatment-induced threats to their masculinity in the long term. [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]

Sleep disturbances are among the most distressing symptoms in cancer: they often co-occur with fatigue, pain and psychological distress. Despite the negative impact on quality of life, patients rarely seek help for managing their sleep disturbances. This paper presents the results of a multicentre observational study on patients' attitudes towards their sleep problems. The study also investigates symptom correlates. Patients responded to a semi-structured interview and completed the following questionnaires: Pittsburgh Sleep Quality Index; Brief Fatigue Inventory; Hospital Anxiety and Depression Scale; and European Organisation for Research and Treatment of Cancer ( EORTC) Quality of Life QLQ- C30 Questionnaire ( QLQ- C30). Four hundred and three cancer patients were enrolled in the study. Bad sleepers constituted 66% of the sample. Thirty-eight per cent of them had not turned to any professional to solve their sleep disturbances because they had various beliefs about the importance of the problem and the possibility to be treated. The main correlates of sleep disturbances were psychological distress, reduced physical functioning and reduced overall quality of life. In conclusion, there is a need to sensitise patients to actively search for a solution to their sleep disturbances so they can be solved along with other co-occurring symptoms. Doctors could also be encouraged to dedicate more attention to routinely asking cancer patients about eventual sleep disturbances. [ABSTRACT FROM AUTHOR]

Understanding the reproductive and fertility concerns of teenagers and young adults with cancer ( TYA) is one aspect of comprehensive age appropriate care. However, limited options for fertility preservation, coupled with vague policy recommendations, give rise to variations in information-sharing between health care professionals and TYAs, particularly as it involves sensitive discussions regarding the short- and long-term effects of cancer and treatments on fertility and reproduction. This paper presents findings from a wider evaluation at a specialist unit for TYAs with cancer. Forty people participated in semi-structured interviews, including 20 young people, parents and partners. Young people were between 2 months and 4 years from finishing treatment. Most young people received mixed levels of information on fertility and counselling before treatment. Diagnosis in the early teens meant how, and from whom, young people received information varied. Young women tended to receive incomplete information. The majority of young people were unaware of their fertility status after treatment had finished. Findings point to the inherent challenges that exist in ensuring young people aged between 13 and 25 years receive comprehensive information on their fertility and potential risk, as well as advice on how to determine their fertility status after treatment has finished. [ABSTRACT FROM AUTHOR]

Refractory cachexia and truth-telling about terminal prognosisa qualitative study The purpose of this paper is to examine the consequences that medical practitioners' decisions about whether or not to be candid about terminal prognosis have for those suffering from refractory cachexia and their families. It presents the findings of a qualitative study that used focus groups and semi-structured interviews of a volunteer sample of doctors, nurses and dieticians in a cancer centre of a large teaching hospital in Northern Ireland. Respondents reported that some physicians tended to avoid discussing terminal prognosis in a direct manner with their patients. Nurses and dieticians tended to be reluctant to engage in conversations about weight loss with patients with cachexia. One of the reasons they reported for their lack of acknowledgement of weight loss concerned the close association between refractory cachexia and terminal prognosis. Because they viewed the telling of bad news as an exclusive prerogative of medical practitioners, they did not feel in a position to discuss cachexia because they were concerned that this had the potential to raise end-of-life issues that lay outside the boundaries of their professional role. This meant patients and their families were provided with little information about how to cope with the distressing consequences of cachexia. [ABSTRACT FROM AUTHOR]

When a parent is diagnosed with cancer it can have a profound impact on the family, especially the children. This paper reports on the experience of parental cancer for parents' and their children and the impact of a psychosocial intervention for young children whose parent has cancer. Using a qualitative design, data were generated from separate focus groups with children ( n = 7) and parents ( n = 6). One-to-one interviews were conducted with professionals delivering the intervention ( n = 2). Findings indicated that parents are often the gatekeeper to how, when and the context in which children learn about parental cancer. Many parents expressed a lack of confidence and skills as they considered communicating with their children about cancer. Parents stated the need for professional input mainly due to changes in their children's behaviour. Children had a number of fantasies and misconceptions surrounding cancer. This psychological intervention normalized their experience of parental cancer. It also improved children's understanding of cancer and equipped them with coping strategies. Professionals perceived the intervention led to improved family communication and promoted discussion of emotions. Open communication is pivotal for children whose parents have cancer but parents need supported and resourced to promote family coping when diagnosed with cancer. [ABSTRACT FROM AUTHOR]

TIMMERMANN C., UHRENFELDT L. & BIRKELUND R. (2013) European Journal of Cancer Care 22, 117-124 Cancer patients and positive sensory impressions in the hospital environment - a qualitative interview study This study explores how cancer patients experience the meaning of positive sensory impressions in the hospital environment such as architecture, decoration and the interior. Data were obtained at a general hospital in Denmark by interviewing six cancer patients at two different wards. The analysis process was guided by the hermeneutical-phenomenological theory of interpretation as presented by the French philosopher Paul Ricoeur. Two main themes were identified: to preserve identity and positive thoughts and feelings. The participants experienced that positive sensory impressions in the hospital environment had a significant impact on their mood, generating positive thoughts and feelings. A view to nature also helped them to forget their negative thoughts for a while. The possibility of having a view helped some cancer patients to connect with good memories and personal life stories that enabled them to recall some of their feelings of identity. This paper adds knowledge about how cancer patients experience sensory impressions in the hospital environment. An environment that provides homeliness and offers a view to nature seems to help some patients to preserve their identity. Furthermore, positive sensory impressions and the opportunity for recreation through environmental facilities strengthen the patient's positive thoughts and feelings. [ABSTRACT FROM AUTHOR]

SWINTON J., BAIN V., INGRAM S. & HEYS S.D. (2011) European Journal of Cancer Care 20, 640-652 Moving inwards, moving outwards, moving upwards: the role of spirituality during the early stages of breast cancer The paper reflects on a study which explored the role of spirituality in the lives of women during the first year after being diagnosed with breast cancer. The study utilised a qualitative method (hermeneutic phenomenology) designed to provide rich and thick understanding of women's experiences of breast cancer and to explore possible ways in which spirituality may, or may not, be beneficial in enabling coping and enhancing quality of life. The paper draws on the thinking of David Hay and Viktor Frankl to develop a model of spirituality that includes, but is not defined by, religion and that has the possibility to facilitate effective empirical enquiry. It outlines a threefold movement - inwards, outwards and upwards - that emerged from in-depth interviews with women who have breast cancer. This framework captures something of the spiritual movement that women went through on their cancer journeys and offers some pointers and possibilities for better and more person-centred caring approaches that include recognition of the spiritual dimension of women's experiences for the management of those with breast cancer. [ABSTRACT FROM AUTHOR]

REID J., Mc KENNA H.P., FITZSIMONS D. & Mc CANCE T.V. (2010) European Journal of Cancer Care 19, 682–689 An exploration of the experience of cancer cachexia: what patients and their families want from healthcare professionals The aim of this paper is to investigate the perceptions of patients and family members with regard to care received for cancer cachexia. A qualitative study recruited 27 participants, of which 15 were patients with advanced cancer who had primary cachexia and 12 were family members. Participants were recruited from a regional cancer centre in the UK. All participants took part in a domiciliary interview, which was transcribed verbatim for analysis. A major finding from analysis was ‘ lack of response from health care professionals’ in relation to cancer cachexia management. This finding illuminated that patients and their family members wanted three things from healthcare professionals. They wanted their profound weight loss acknowledged, they wanted information about it and why it was happening and they wanted interventions to deal with it. This paper provides powerful messages for healthcare professionals and highlights the needs of patients and their family regarding cancer cachexia management. Patients and their families want this problem addressed by healthcare professionals. This client group requires supportive healthcare interventions, so that they can understand the nature and impact of this syndrome. [ABSTRACT FROM AUTHOR]

The aim of this paper is to briefly describe the unique methodology employed by nine nurse researchers who conducted research into the social and emotional effects of chemotherapy from the patient’s perspective, and to present four dominant themes. The research developed from discussions at a local UK Nurses Oncology Forum, during which nurses voiced their concern about the social and emotional implications for people receiving chemotherapy. It was anticipated that understanding the issues from the patient’s perspective would assist nurses to reconsider and reshape the care provided, particularly in the chemotherapy clinic. Using principles of phenomenology, the nurse researchers collected data from participants using conversational-style interviews. Some participants kept diaries of chemotherapy experiences. These data were subsequently analysed using a modified phenomenological analysis framework. Nineteen people were recruited to the study, resulting in 98 interviews and seven diaries. Eight major themes emerged from the data: striving for normality, the role of significant others, feeling up – feeling down, flagging, being sociable, anxiety, the chemotherapy process, and participating in the research. Relationship dynamics, the perceived role of significant others and the frustrations associated with lack of concentration and memory loss are important findings that should influence nursing care and management. [ABSTRACT FROM AUTHOR]

Presents a research that aims to establish the reliability of the caregiver quality of life index (CQLI) in a new verbal interview format. Replacement of the visual analogue response format; Measurement of CQLI reliability for test-retest stability; Use of the CQLI instrument in measuring overall quality of life of hospice caregivers on an ongoing basis.

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]

Aim. To describe the process of developing a resource, the "Prostate Cancer Outcomes Report Card," that provides information for men with prostate cancer and their family members about the outcomes of different treatment approaches. Methods. The project consisted of two phases. The first phase involved analysis of real-world data and translating outcomes into a format that consumers found easy to understand and interpret. The Report Card was developed in consultation with a consumer advisory group (n = 8). The second phase involved refinements of the resource through exploratory qualitative interviews with consumers (n = 14), an online survey among the general public (n = 134), and clinician feedback (n = 8). Results. Consumer engagement to explore preferences about the content and visual presentation from the end-users' perspective was crucial in designing this report. Consumers required trustworthy, comprehensive, simple, and up-to-date information collated in one place to help them understand the risks and benefits of their treatments. Presenting survival, cancer recurrence, and functional outcomes by treatment type and risk category was highly commended while data on high survival rates were considered reassuring. We identified high levels of unmet psychosocial and supportive care need, with differences in individual preferences around extent of information required. Conclusions. Communicating registry data about real-world outcomes in a consumer-friendly way may help fill a gap in information needs among prostate cancer survivors. Providing relatively simple and easily understandable evidence in a single consumer-oriented report may help prostate cancer survivors become better informed and facilitate patient-provider communication and shared decision making. [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]

Prostate cancer invariably impacts men's health and well-being and remains the most common male cancer. This study explored how men with prostate cancer who were scheduled for radical prostatectomy made sense of their cancer diagnosis. A narrative analysis was performed of 18 men's life stories at three different time points: preoperatively (n = 13), three months postoperatively (n = 10), and six to nine months postoperatively (n = 11). In total, 34 interviews were undertaken in Ireland to examine how men talked over time. Riessman's narrative analytic technique and structural and thematic analysis were used as the analytic framework. The following four themes emerged which reflected how men made sense of their prostate cancer diagnosis: seeking coherence, connecting through collective masculinity, rejecting a survivorship identity, and positioning prostate cancer. Seeking coherence was evident in the preoperative phase whilst the other three themes emerged in both postoperative time points. Whilst the experience of prostate cancer was an individualised one, masculine identity and narrative positioning underpinned every aspect of men's accounts. Subscription to and expression of a masculine identity underpinned all aspects of the men's narratives. In conclusion, it is recommended that care interventions targeted towards meeting the unmet needs of this group account for this highly masculinised experience. Appropriately sequenced information and support which is gender sensitive to individualised and collective identity expression is crucial. Acknowledgment of masculinised language is also recommended for men's individual and collective recovery from this life-altering experience. [ABSTRACT FROM AUTHOR]

Introduction: Existing research has found that both lung cancer patients and their informal caregivers reported higher level of emotional distress and psychological maladjustment. However, limited attention has been afforded to collective emotional experiences in patient‐caregiver dyad, especially during progression‐free survival. Objective: This study attempted to explore extrinsic emotional regulation experienced by lung cancer patients and familial caregivers in China. Methods: By adopting a qualitative descriptive approach, data were collected using face‐to‐face, in‐depth semi‐structured interviews from July to August 2021. Using purposively sampling, this study interviewed 13 patients and 7 caregivers through conjoint and individual interviews. Results: Based on data analysis, findings demonstrated emotional congruence, implicit emotional disclosure and emotional contagion within families as indicators of mutual responsiveness to cancer in patient–caregiver dyads. Furthermore, caregivers tended to adopt relationship engagement to facilitate patients to maintain mental wellness during PFS. Oncology care should promote the implement of patient‐ and family‐centred care, especially enhancing dyadic coping in emotional regulation. Conclusion: Patients and caregivers experienced mutual responsiveness to cancer‐induced emotions. Additionally, caregivers adopted relationship‐based care ethics to facilitate patients to maintain mental wellness. [ABSTRACT FROM AUTHOR]

Objective: The purpose of this study was to describe factors affecting the place of death of children with cancer at the end of life. Methods: The descriptive phenomenological approach was used. Eighteen mothers who lost their children to cancer participated in in‐depth interviews. Data were analysed using MAXQDA software version. Codes and categories were developed inductively from participants' narratives. Results: The factors affecting the place of death of children were categorised into two main themes: (1) desires and (2) conditions. Most of the mothers reported that their deceased children wanted to be with their families at the end of life and they wanted to go home. The conditions related to health services were defined as the barriers to the death of their children in the places of death preferred by the mothers. Conclusion: The desire to be close to the child was the main factor affecting the parents' decisions. The findings revealed the prevailing circumstances in the death place decision beyond parental desires. These were the child's health conditions, physical conditions of hospitals, and the lack of home care and paediatric palliative care services, which were factors related to the system, and the lack of other options for parents. [ABSTRACT FROM AUTHOR]

Objective: Palliative care improves outcomes for patients with thoracic cancer; however, limited evidence exists for the benefits of this approach for caregivers. This study aimed to advance understanding of the experiences of palliative care described by bereaved caregivers. Methods: Fifteen adult caregivers completed semi‐structured interviews following prior participation in a randomised controlled trial of early referral to palliative care versus discretionary referral to palliative care. Interviews explored caregiver experiences of palliative care delivery. Interview transcripts were thematically analysed. Results: Four related themes about the experiences of palliative care were identified, each of which required sufficient time between palliative care first contact and death: 'relationship building'; 'clear communication and information'; 'access to practical support'; and 'access to psychosocial support'. The core category underpinning these themes was palliative care facilitates caregiver preparedness. Caregivers noted that palliative care played a critical role in preparing them for the future and described a sense of practical and emotional 'relief' associated with the support services made available to them. Conclusion: Our findings emphasise that palliative care can have a positive impact on caregivers' preparedness for providing the care needed by thoracic cancer patients and that this can improve the experiences of both caregivers and patients. [ABSTRACT FROM AUTHOR]

Objective: Individuals diagnosed with low risk, localised prostate cancer (PCa) face a difficult decision between active surveillance (AS) and definitive treatment. We aimed to explore perceived influences on treatment decision‐making from the patient and partner's perspectives. Methods: Patients (and partners) who met AS criteria and had chosen their treatment were recruited. Semi‐structured individual interviews were conducted via telephone to explore experiences of diagnosis, impact on patient lifestyle, experiences with physicians, treatment preferences/choice, treatment information understanding and needs, and overall decision‐making process. Interviews were audio recorded, transcribed verbatim, and analysed using Reflexive Thematic Analysis. Results: Twenty‐four male patients (18 chose AS) and 12 female partners participated. Five themes relating to social‐ecological influences on treatment choice were identified: (1) partner support and direct influence on patient treatment choice, (2) patient and partner vicarious experiences may influence treatment decisions, (3) the influence of the patient's life circumstances, (4) disclosing to wider social networks: friends, family, and co‐workers, and (5) the importance of a good relationship and experience with physicians. Additionally, two themes were identified relating to information patients and partners received about the treatment options during their decision‐making process. Conclusions: A range of individual and social influences on treatment decision‐making were reported. Physicians providing treatment recommendations should consider and discuss the patient and partner's existing beliefs and treatment preferences and encourage shared decision‐making. Further research on treatment decision‐making of partnered and non‐partnered PCa patients is required. We recommend research considers social ecological factors across the personal, interpersonal, community, and policy levels. [ABSTRACT FROM AUTHOR]

Objective: Cancer is a global public health issue that continues to increase because of aging and adoption of cancer‐causing behaviours. In Ethiopia, cancer belongs to the second most common non‐communicable disease. Cancer patients face a range of unmet needs in multiple aspects of their lives. Supportive care is defined as essential care that helps patients to cope with cancer. This study aims to assess the predictors of unmet supportive care needs in adult cancer patients in Ethiopia. Methods: Institution‐based cross‐sectional study was done from February to March 2019 in adult cancer patients. Three hundred seventy‐one patients were interviewed using convenience sampling. Supportive care needs were used as outcome variables, dichotomized as 'no need' and 'unmet needs'. Variables with a p‐value of <0.2 were candidates for multivariable logistic regression. Results: From 371 patients, 69.8% were females with a mean age of 47 years; the commonest type of cancer was gynaecological cancer. Information about diagnosis, stage of cancer, time since diagnosis, age, wealth index, employment status, gender, type of treatment, history of recurrence, type of cancer and information about diagnosis modified by the source of information were predictors of unmet supportive care needs. Conclusions: The study emphasised the importance of considering sociodemographic, clinical and information‐related factors when dealing with cancer patients. Programmes, guidelines and services that focus on supportive care needs should be established and/or implemented. [ABSTRACT FROM AUTHOR]

Objective: In this sub‐study from the 'PACCS' study, we explored the psychosocial experiences of children and adolescents in everyday life post‐cancer treatment and the possible factors that can moderate these experiences. Methods: This is a qualitative explorative study using semi‐structured interviews with 43 childhood cancer survivors between the ages of nine and 18 from Norway and Denmark. We conducted a secondary thematic analysis using Malterud's systematic text condensation. Results: Two main themes were identified: 'The post‐treatment gap between expectations and reality' comprised two subthemes: (1) lack of mastery and feeling different and (2) lack of understanding and acceptance. The second main theme, 'Managing the gap', comprised three subthemes: (1) information and knowledge, (2) adjustments and adaptions and (3) social support and openness. The findings reveal that the psychosocial challenges resulted from the remaining ability gap(s). Measures such as tailored information, school adjustments and social support were potential dynamic factors affecting the gap(s) positively or negatively. Psychosocial challenges post‐treatment are experiences of lack of acceptance and understanding from others. Conclusion: To safeguard a positive transition back to everyday life, health care providers should support the survivors' psychosocial care, including getting back to school and re‐entering social interactions. [ABSTRACT FROM AUTHOR]

Objectives: Supporting cancer patients during COVID‐19 has posed unique challenges for health care providers. We investigated patient and carer–charity interactions to explore the role of charities and identify concerns expressed by patients. The study aims to address these concerns and learn how health care providers can support patients. Methods: Digital interactions on forum posts and social media were collected from four gynaecological cancer charities from March‐May 2019 (before COVID‐19) and 2020 (during COVID‐19). Thematic analysis of forum posts and semistructured charity staff interviews investigated patient and charity‐focused perspectives. Results: Thematic analysis of forum posts and charity staff interviews (n = 8) revealed three consistent themes: (1) Health care changes and the effect on cancer management concerns; (2) psychological impact of lockdown isolation and anxiety of changed treatment; (3) the complexity of shielding guidance on self‐risk assessment. Patients valued cancer charities' responses through digital and conventional methods (webinars, social media, forums, and websites). Conclusion: Gynaecological cancer patients had concerns about the risk and impact of changed treatment plans, contacting charities as the first port of call when anxious not to burden health systems. Real‐time analysis of charities' communications can be used to identify concerns and to proactively provide patient support, together with health care providers. [ABSTRACT FROM AUTHOR]

Objective: Little is known about concurrent physical, psychological, social and spiritual distress experienced by older patients during early stages of advanced cancer while receiving life‐prolonging treatment. Drawing on the concept of total pain, this study explored the multi‐faceted symptoms of pain in older patients with advanced gastrointestinal cancer while receiving palliative chemotherapy. Methods: A total of 14 in‐depth interviews with seven participants were conducted, one interview at the beginning and one after completion of chemotherapy. Participants were ≥70 years, diagnosed with advanced gastrointestinal cancer and receiving palliative chemotherapy. Results: Thematic analysis revealed four themes: variability and inevitability of physical pain, ways of coping with psychological pain, mitigating social pain through contributions to social life and the anticipation of existential pain in old age. Conducting two interviews with each participant foregrounded the changing nature of the participants' experienced symptoms and life perspectives while receiving palliative chemotherapy. Further, old age was experienced as integral to how participants described their situation and indicated an acceptance of old age. Conclusion: Older adults with advanced cancer are affected by multiple‐faceted symptoms resulting from cancer and its treatment. The concept of total pain is suggested to guide interdisciplinary palliative care in earlier stages of advanced cancer. [ABSTRACT FROM AUTHOR]

Objective: This study aimed to examine the stressors and contextual factors that affect the quality of life (QoL) of caregivers of advanced cancer patients and to address their caregiving experiences. Methods: The study had an embedded mixed‐methods design and was conducted in the medical oncology unit of a training and research hospital in Turkey. In the quantitative phase, 125 patients with advanced cancer and their family caregivers were included. In the qualitative phase, 21 family caregivers were included. The analysis of quantitative data was carried out using SPSS 25.0 statistical program, and qualitative data were carried out using Collaizi's seven‐step descriptive analysis approach. QoL was determined as the dependent variable and evaluated with Caregiver QoL Index‐Cancer (CQOLC). Results: The symptoms, care dependency of patients, and preparedness to the care of caregivers showed a direct impact on the CQOLC. Income level, employment status, and daily caregiving hours demonstrated a direct effect on the CQOLC. Four themes emerged from the interviews: Understanding the dynamics of the caregiving process, losing control of life during the caregiving process, limitation of socio‐economic freedom in the caregiving process, and the effort to hold on to life in the caregiving process. Conclusion: The cancer family caregiving experience model is a useful model for evaluating the QoL of caregivers from a multidimensional perspective. Health care professionals should not forget that the QoL of family caregivers should be evaluated in multiple ways, and education programmes for family members should be structured. [ABSTRACT FROM AUTHOR]

Objective: This study aimed to examine whether the 10‐item Risk Score List (RSL) accurately predicts delirium in patients admitted to inpatient hospice care and whether this instrument can be simplified. Determining the risk for developing delirium can help to treat these patients in a timely manner. Methods: This was a retrospective medical record study in patients who died in 2019 or 2020 in three hospices. Predictive values were examined using Cox regression analysis, crosstabs, and C‐statistic. Results: In total, 240 patients were included. Median age at admission was 78 (IQR 70–84) years. Primary diagnosis most often was cancer (n = 186, 78%); 173 (72%) patients had an increased risk of delirium according to RSL, of whom 120 (69%) developed delirium. Overall, 147 (61%) patients developed delirium. The RSL significantly predicted future delirium (HR 3.25, CI 1.87–5.65, p < 0.01) and had a sensitivity of 85%, a specificity of 43%, positive predictive value of 62%, negative predictive value of 73%, and a C‐statistic of 0.64. Simplifying the RSL to four items still significantly predicted future delirium, with similar predictive values. Conclusion: Delirium occurs in more than half of patients admitted to hospice care. The RSL can be simplified to four items, without compromising on predictive accuracy. [ABSTRACT FROM AUTHOR]