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This document is a list of references from various research articles related to pain management in different contexts and populations. The articles cover topics such as cancer pain management in Mexico, nurses' perceptions of pain assessment in Estonia, barriers to pain management in Saudi Arabia and Kenya, and cultural factors affecting Chinese migrants' responses to cancer pain. The document also includes references on non-pharmacological pain management methods, attitudes and knowledge of healthcare professionals towards pain management, and barriers to pain relief at the end of life. [Extracted from the article]

Background: Palliative care remains underutilized by African American patients with advanced cancer. Community health workers (CHWs) may help improve palliative care outcomes among this patient population. Objectives: To explore barriers to success of a proposed CHW intervention and synthesize design and implementation recommendations to both optimize our intervention and inform others working to alleviate palliative care disparities. Design: Semi-structured qualitative interviews. Setting/Subjects: Key informants were health care professionals across clinical, leadership, and community health fields. Participants were recruited through purposive sampling from Baltimore, Maryland; Birmingham, Alabama; and Salisbury, Maryland. Measurements: Interviewers used an interview guide grounded in established implementation science models. Data were analyzed through a combined abductive/deductive approach by independent coders. A framework methodology was used to facilitate thematic analysis. Results: In total, 25 professionals completed an interview. Key informants discussed multiple barriers, including at the patient level (lack of knowledge), clinician and facility level (decreased workflow efficiency), and health system level (limited funding). Recommendations related to the intervention's design included high quality preintervention CHW training and full integration of CHWs into the care team to "bridge" divides between outpatient, inpatient, and at-home settings. Intervention delivery recommendations included clearly defining care team roles and balancing flexibility and standardization in CHW support approaches. These recommendations were then used to adapt the planned intervention and its implementation process. Conclusions: Clinicians, cancer center leaders, and CHWs identified multilevel potential barriers to the intervention's success but also described recommendations that may mitigate these barriers. Key informant input represents an important step prior to initiating CHW-based interventions. [ABSTRACT FROM AUTHOR]

We aimed to examine the relationship between body image and the meaning of life among women with breast cancer. The analytic sample included 142 women with breast cancer, and data were collected using a standardized questionnaire through face-to-face interviews. We used Kolmogorov–Smirnov test, Pearson test, Spearman and Mann–Whitney U test to determine the relationship between the research variables. We found an association between the mean score of body image and the mean score of the meaning of life. As the average score of body image increases, the score of the meaning of life increases (p < 0.05). Findings indicated that the body image score increases by increasing the score of the meaning of life and its dimensions, especially existential vacuum and acceptance of death. Future research and targeted treatments should consider the role of body image in shaping the meaning of life among women with breast cancer. [ABSTRACT FROM AUTHOR]

Simple Summary: This pilot study aims to identify the physical, mental, social, psychological, and health needs encountered by cancer survivors in order to propose and facilitate appropriate and tailored responses. To the best of our knowledge, this is one of the first multidimensional studies investigating this topic in Italy. Data show that the quality of life of cancer survivors is affected by cancer and its treatment, reporting more frailties than the general population, especially those over 65 years old. These findings could help develop multidisciplinary planning of survivorship care for the transition of patients from oncological management to primary healthcare. Background: Understanding the specific needs of cancer survivors is essential for healthcare policy. In Italy, dedicated studies are lacking, so we aimed to investigate the physical, mental, social, and health difficulties encountered by these patients. Methods: We conducted a cross-sectional study on breast or colorectal cancer survivors (people 5+ years free from it and its treatments) using an ad hoc survey including validated questionnaires (Grauer–Palombi, SF-36, PREDIMED). Participants were recruited within the Oncology Unit of the "Policlinico Tor Vergata", Italy. Results: A total of 62 patients (80.6% females; years range: 37–87) agreed to be interviewed. A profile of cancer survivors was drafted: an overaged person with multiple co-morbidities, not well-nourished, adhering to the Mediterranean diet, reporting critical conditions as for physical and functional status. The mean number of co-morbidities was 3.6 ± 2.4 SD, with a statistically significant difference between age groups (under and over 65). Compared to the general population, the sample showed more frailties, especially when >65. The risk of having multimorbidity (four or more co-morbidities) significantly increased in those over 65 (OR: 4.72; CI: 1.43–15.59). Conclusion: There is an urgent need for survivorship care planning for the patient-centered continuum of care. Assessing and monitoring their specific needs will help propose appropriate and tailored responses. [ABSTRACT FROM AUTHOR]

Oncology patients face challenges beyond those directly affecting their cancer management. Guided personal narrative programs have been shown to help patients with chronic conditions and life-framing events. Few such narrative programs have been reported for cancer patients or analyzed for their impact on patient experience. We established our Life Story Narrative Program, modeled on the United States Veterans Affairs' "My Life, My Story" for outpatient oncology patients in our hospital's cancer center. Press Ganey™ patient experience scores from program participants were compared retrospectively with scores from patients who were not participants. Over an eight-month period, we invited 30 cancer center outpatients to participate. Twenty-seven individuals accepted, and 18 had their stories edited, approved, and scanned into their electronic health record. Cohort matching yielded a control arm consisting of 255 responses from 48 surveys, while the intervention arm consisted of 68 responses from 12 surveys. 78.4% of responses from the control arm were rated 5 compared with 100% in the intervention arm. The mean Press Ganey™ score response in the control arm was 4.71 compared with 5.00 from the intervention arm. Wilcoxon U value was 10,540 with p <.001. An outpatient narrative medicine program for cancer patients to tell their life stories can easily be organized. Patients were willing to participate, enrollment was brisk, and the use of resources was limited. Although our sample size was small, participation in our Life Story Narrative Pilot Program resulted in a statistically significant improvement in Press Ganey™ scores. [ABSTRACT FROM AUTHOR]

While many cancer patients who use tobacco try to quit post-diagnosis, some prefer to quit without using tobacco treatment, despite evidence against unassisted quit attempts. This study aimed to understand the rationale for some cancer patients' desire to quit tobacco without assistance. Thirty-five adult cancer patients who currently used tobacco and declined tobacco treatment because of the desire to quit unassisted provided data via a standardized questionnaire and a semi-structured interview. The sample was predominately White, non-Hispanic (85.71%) and female (68.57%). The most common cancer site was gynecological. Key themes that emerged from the interviews were: self-reliance, willpower, social norms, and negative attitudes toward tobacco treatment. The most frequently endorsed barrier to tobacco treatment was " I know others who have quit without tobacco treatment" (82.86%). This study with cancer patients identified affective, cognitive, and personality factors related to quitting unassisted, and social and systemic reasons to not use tobacco treatment. [ABSTRACT FROM AUTHOR]

Breast cancer is considered one of the most frequent causes of morbidity and death in women. Individuals' response to information regarding health threats and illness can influence the adjustment of the treatment to existing conditions including the issues of non-completion of treatment or non-attendance at medical appointments. The study aimed to examine the relationship between illness perception, body image dissatisfaction and (mal)adaptive coping styles in breast cancer patients. A sample of 197 patients with diagnosed breast cancer hospitalized at the Center for Oncology and Radiology, Kragujevac, Serbia, was surveyed. The instruments included sociodemographic questionnaire, a Brief Illness Perception Questionnaire (BIPQ), a Body Image Scale (BIS), and a Mini-Mental Adjustment to Cancer Scale (Mini-MAС). Results showed that 52% of the variance of maladaptive coping style in women who underwent mastectomy was explained by the negative illness perception, while body image dissatisfaction reflected through this connection (CFI >.95, GFI >.95, RMSEA =.01, SRMR =.08). Similar results were found in patients with breast-conserving surgery but with lower percentage (36%) of variance explained (CFI >.95, GFI >.95, RMSEA <.02, SRMR <.05). If confirmed by further studies, these results would suggest that patients who underwent mastectomy tend to be more dissatisfied with their body image, have tendency to perceive illness as threatening and resort to maladaptive coping styles. However, any form of appearance modification, including breast-conserving surgery, carries the risk of body image dissatisfaction, and consequently the risk of maladaptive coping behaviors. Our results suggest that health professionals and public policies should put an additional focus on the assessment of the patient's body image dissatisfaction, to improve the health and wellbeing of the affected women. [ABSTRACT FROM AUTHOR]

Tumor mutation profiling (MP) is often conducted on tissue from biopsies conducted for clinical purposes (diagnostic tissue). We aimed to explore the views of patients with cancer on who should own tumor biopsy tissue, pay for its storage, and decide on its future use; and determine their attitudes to and predictors of undergoing additional biopsies if required for research purposes. In this mixed methods, cross-sectional study, patients with advanced solid cancers enrolled in the Molecular Screening and Therapeutics Program (n  = 397) completed a questionnaire prior to undergoing MP (n  = 356/397). A subset (n  = 23) also completed a qualitative interview. Fifty percent of participants believed they and/or relatives should own and control access to diagnostic tissue. Most (65.5%) believed the government should pay for tissue preparation. Qualitative themes included (1) custodianship of diagnostic tissue, (2) changing value of tissue across time and between cultures, (3) equity regarding payment, and (4) cost-benefit considerations in deciding on additional biopsies. Policy and regulation should consider patient perspectives. Extension of publicly funded health care to include tissue retrieval for clinical trials should be considered. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To read about the experiences of people with chronic cancer in developing expertise in their condition • To be aware of areas in which CNSs can support people with chronic cancer to develop expertise in their condition • To recognise the need for specialised nurse-led services to support people with chronic cancer to manage and understand their condition. Background: The lifting of the coronavirus disease 2019 (COVID-19) pandemic restrictions in the UK has meant a near-full return to normal life for the general population. However, for patients with chronic cancer, the risk of severe illness from COVID-19 remains high because they are immunocompromised, and they may have various unmet support needs. Aim: To identify areas in which clinical nurse specialists (CNSs) can support people with chronic cancer in the UK to develop expertise in their condition, acting to minimise the risks of anxiety and depression in this population. Method: Narrative online interviews were conducted with seven people with chronic lymphocytic leukaemia. Transcripts were analysed using thematic and narrative methodologies. Findings: Two themes were identified. The first theme, holes in the system, explored the perceived position of chronic cancers at the bottom of the cancer hierarchy, which can cause patients to feel overlooked in terms of NHS service provision. The second theme, co-developed expertise, explored the mechanisms used by patients with chronic cancer to develop expertise in their condition and the role of specialised healthcare professionals in co-developing this expertise. Conclusion: Although the participants often felt let down by the healthcare system, support from CNSs was beneficial and empowered them to develop expertise in their condition. This indicates that there is a need for dedicated nurse-led chronic cancer pathways to minimise the risk of cancer-related anxiety and depression. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To recognise the importance of effective pretreatment consultations (PTCs) for patients with cancer and their relatives • To learn about the potential benefits and disadvantages of group PTCs for patients, relatives and nurses • To be aware of the need to explore the feasibility and acceptability of delivering group PTCs in practice. Background: Patients with cancer receiving systemic anticancer therapy (SACT) historically attended a one-to-one hospital pretreatment consultation (PTC) with a SACT nurse who provided educational and psychological support. However, these PTCs had limitations for patients, relatives and the SACT nurses delivering them. Aim: To develop a psychosocial and educational group intervention to support the SACT informational needs of patients with cancer and their relatives. Method: A multi-method qualitative study design was adopted. A group PTC was developed through: observations of one-to-one nurse-led PTCs and doctors obtaining patients’ consent for SACT; two focus groups with healthcare professionals (n=12); semi-structured interviews with healthcare professionals (n=6); two focus groups with patients who received SACT (n=10) and their relatives (n=2); and semi-structured interviews with patients who received SACT (n=4). The intervention was presented in a workshop and SACT nurses (n=10) were trained in its delivery. Findings: Overall, the intervention proposal appeared to be received positively by patients, relatives and healthcare professionals. However, questions remained over the feasibility and acceptability of delivering group PTCs. Conclusion: The group PTC seems to be promising, although it requires piloting. Group PTCs are expected to encourage patients and relatives to manage and report symptoms, by promoting family-centred care. It is also anticipated that the group approach will make better use of SACT nurses’ time so they are more available to provide individualised care during treatment administration, while also reducing their emotional labour. [ABSTRACT FROM AUTHOR]

Background: Although there are a growing number of studies investigating the benefits of music therapy interventions with patients diagnosed with cancer, few studies have taken an approach that specifically examines indices of perceived well-being in women with breast cancer. Overcoming these challenges can be an important step in the recovery process. Purpose: The purpose of our study was to know the positive influence of responsive music therapy through gong sounds, emitted live, on different areas of well-being of women with breast cancer. Methods: Four individual sessions of responsive music therapy with live gong sounds were conducted in which three women (M = 54; SD = 5.57) participated both in the music therapy program and in the completion of the Functional Assessment of Cancer Therapy – Breast (FACT-B) and a semi-structured interview with ad hoc designed questions about perception of qualitative aspects. Results: The results showed that the music therapy sessions significantly improved, p =.043 < 0.05, various domains of perceived well-being in women with breast cancer. Discussion: This article highlights several key benefits associated with music therapy and various indices of well-being in women with breast cancer, identifies the limitations of the study, and discusses the findings. It is considered necessary to replicate this practice in future studies that include a larger sample and age range over longer follow-up periods. Translation for Health Education Practice: The text highlights the importance of considering music therapy as a complementary intervention in comprehensive cancer care programs, which may be relevant to health educators when considering intervention and support approaches for cancer patients. Health education interventions targeting the enhancement of cancer patients' well-being should incorporate music therapy techniques. [ABSTRACT FROM AUTHOR]

Aim: To explore and analyse the adaptation process of patients and their families at the point of lung cancer diagnosis. Methods: Totally 23 operable lung cancer patients were included in this study. Colaizzi's method of phenomenology was employed for data analysis. Results: This study found two different aspects of family adaptation at the diagnosis of lung cancer. For family resilience, three themes emerged: (1) Positive family belief systems (giving meaning to a cancer diagnosis and maintaining a positive/optimistic attitude), (2) Flexible family organizational patterns (maintaining the stability of family structure and function, adjusting the relationship between patients and family members and receiving external support and help) and (3) Good communication and problem‐solving strategies (open communication on an equal basis, positive and open expression of emotions and collaborative problem‐solving). For family vulnerability, three themes were as follows: (1) Negative family belief systems (negative attitudes and concealment and self‐isolation due to stigma), (2) Rigid family organizational patterns (adaptation lost, conflicts between family support and patients' willingness and pressure upon social support) and (3) Unhealthy communication and problem‐solving (poor communication, emotional asymmetry of family members and tendency to solve problems alone). Conclusion: The study highlights the existence of the family resilience and family vulnerability at the point of lung cancer diagnosis and provides patient's perspective for understanding family resilience in specific cultural contexts. Patient Contribution: The data were collected through face‐to‐face interviews. Trail registration number: ChiCTR2300074801. [ABSTRACT FROM AUTHOR]

Background: Cancer is a leading cause of morbidity and mortality globally. Dyspnea, affecting up to 60% of cancer patients, exacerbates physical and psychological distress, reducing quality of life. This study aims to explore the relationship between dyspnea and factors such as age, sex, clinical diagnosis, and treatment lines in cancer patients, with the goal of improving understanding and management of this debilitating symptom to enhance patient care and quality of life. Methods: This study employed an observational, cross-sectional, and descriptive approach to investigate patients with oncological disease at the University Hospital of Salamanca between March 2021 and April 2024. A convenience sample was selected, including patients over 18 years old with a pathological diagnosis of cancer, experiencing any degree of dyspnea, and who consented to participate by signing the informed consent. Exclusion criteria included lack of consent and clinical conditions that prevented an interview. The studied variables encompass sociodemographic (age, gender, diagnosis, tumor stage, number of treatment lines) and clinical aspects (daily activities, degree of dyspnea, functional capacity, physical performance), evaluated using the Barthel Index, the mMRC Dyspnea Scale, the ECOG Scale, and the Short Physical Performance Battery (SPPB). Data were collected through semistructured interviews and medical records, and analyzed using specialized software. This research has ethical approval CEiM Code 2023 12 1472, Reference 2024/01. Results: The mean age was 66.82 years. Lung cancer was predominant (60.2%), with most patients in stage 3 (65.7%) and receiving three treatment lines (68.7%). Higher age, advanced disease stage, and more treatment lines correlated with lower Barthel and SPPB scores, and higher ECOG and mMRC scores, indicating worse functionality, physical performance, and greater dyspnea. No significant correlations were found between gender or pathological diagnosis and the studied variables. Conclusions: Advanced age, higher disease stage, and more treatment lines are associated with decreased functionality, poorer physical performance, and increased dyspnea in cancer patients. Gender and specific cancer diagnosis do not significantly affect these relationships. Addressing dyspnea is crucial to improving the quality of life and physical performance in this population. Future studies should explore additional factors like treatment types and nutritional status. [ABSTRACT FROM AUTHOR]

Objective. Oncology and palliative care guidelines for patients with incurable cancer recommend supporting patients at the end of life (EOL) by considering their personal values, wishes, and goals to facilitate decision making in advance care planning and patient‐centered care. It is unclear, though, how to successfully address and integrate personal values in clinical practice. The aim of this study was to explore values, wishes, and goals from the perspective of patients with advanced lung cancer. Methods. Semistructured interviews were conducted with patients with advanced lung cancer and transcribed verbatim. The data were analysed using a structured content analysis. After identification of main categories, values were identified using Schwartz's Theory of Basic Human Values as a theoretical framework. Results. Identified main categories were "the individual in medical care," "living now," and "coming to terms." Values in the dimensions "conservation" and "openness to change" were described concerning patient‐physician interaction, therapy goals, preparedness for EOL, and life goals. "Self‐transcendence" values mainly related to caring for the burden on relatives. In general, patients showed reluctance in expressing information about personal values when communicating with physicians. Conclusion. Patients with advanced lung cancer engage in various ways to determine how they want and can influence their life and medical care. Different values and the associated wishes and goals play a crucial role in this context and should be taken into account by healthcare providers. The reluctance to express personal information in medical encounters underscores the need for a proactive attitude in physicians and improved interprofessional collaboration. The study was registered in the German register for clinical trials (DRKS00026993). [ABSTRACT FROM AUTHOR]

Purpose: Few studies have specifically targeted symptom management interventions for adolescent and young adult (AYA) cancer survivors. A greater understanding of AYA cancer survivors' experiences with cancer treatment-related symptoms would help develop age-appropriate oncology symptom management interventions. The purpose of this qualitative analysis was to explore AYA cancer survivors' experience with cancer treatment-related symptoms. Methods: Nineteen post-treatment AYA cancer survivors (18–39 years old) who self-reported moderate–severe cancer treatment-related symptom severity participated in video conferencing or telephone interviews. The questions in the interview guide queried participants to share their experience with cancer treatment-related symptoms. Inductive content analysis was used to identify themes from the interviews. Results: The themes that emerged from the interviews included (1) cancer treatment-related symptoms negatively affected AYA cancer survivors' quality of life (e.g., symptoms served as a reminder of cancer recurrence possibility); (2) AYA cancer survivors' attitudes and feelings about communicating cancer treatment-related symptom concerns to clinicians (e.g., patient–clinician communication was bolstered when AYAs perceived that symptoms were being taken seriously); (3) AYA cancer survivors are interested in oncology symptom management clinical trials, but logistical challenges are barriers to participation; and (4) AYA cancer survivors are interested in nonpharmacological treatments for symptom management. Conclusion: Results highlight the burden of cancer treatment-related symptoms on day-to-day life among post-treatment AYA cancer survivors. Future work is needed to identify nonpharmacological symptom management interventions, strategies to improve patient–clinician communication about symptoms, and strategies to increase the visibility and accessibility of symptom management clinical trials for AYA cancer survivors. [ABSTRACT FROM AUTHOR]

Purpose: Reproductive health (RH) is a critical issue among cancer survivors worldwide. However, in developing countries where RH services for patients with cancer are often lacking, reproductive concerns among adolescent and young adult (AYA) survivors remain uncertain. In this study, we assessed the reproductive concerns of AYA cancer survivors in a resource-limited context of Uganda. Methods: We collected data from AYA cancer survivors at two facilities in Uganda using an interviewer-administered questionnaire. Descriptive statistics were calculated, one-way analysis of variance was used for intergroup comparisons, and multiple regressions were used to test for predictors of reproductive concerns. Results: A total of 110 AYA cancer survivors, with a median age of 20 years (interquartile range [IQR], 18–22), were interviewed. More than half (53.6%) of the respondents were males. The median time since cancer diagnosis was 19 months (IQR, 13.0–35.0). Almost all (91.8%) respondents had a future desire to have children, but only 15.5% received reproductive counseling. The mean total score for the reproductive concern subscales was highest for the fertility concern, followed by the information-seeking and health-related concerns. Reproductive counseling, desire to have children, and respondents' age were the factors influencing reproductive concern. Conclusions: The study shows a strong desire for biological parenthood with very low reproductive counseling among AYA cancer survivors, who remain concerned about their fertility, information needs, and health. This outcome underscores the need to integrate RH services into resource-limited cancer care settings. [ABSTRACT FROM AUTHOR]

Purpose: Assessing patient and guardian experiences regarding their history of ovarian tissue cryopreservation (OTC) years after initial procedure. Methods: Cross-sectional follow-up telephone survey. A questionnaire developed by The Pediatric Initiative Network of the Oncofertility Consortium, modified to assess intent and attitudes regarding OTC, tissue access knowledge, financial burden of tissue storage, and intent to use tissue, was utilized. Interviews were conducted for those who underwent OTC at a metropolitan children's hospital between 2013 and 2022. Results: Of 60 eligible patients, 39 interviews were completed. Contacted patients were 3–28 years old, with minors accompanied by guardians. Average age at OTC was 8.5 years old, and 5.1% (2/39) were deceased at the time of contact. All interviewees underwent OTC for fertility preservation before gonadotoxic treatment. Seventy percent of patients (7/10) and 48.1% (13/27) of guardians stated they would use frozen tissue for pregnancy, with 50% (5/10) of patients and 59.3% (16/27) of guardians not understanding tissue access. Regret occurred in 10% (1/10) of patients and 3.4% (1/29) of guardians. It was associated with 10.8% (4/37) of tissue discard due to failed storage payments. Financial concerns occurred in 29.7% (11/37) of interviewees. Overall, 92.3% (36/39) would recommend OTC, and 94.9% (37/39) would repeat their choice to undergo OTC. Conclusion: Follow-up after OTC is essential to patient understanding of tissue status, access, and payments. Most do not regret OTC, except in cases of financial burden leading to tissue discard. Follow-up should be sequentially scheduled and include counseling on financial assistance programs. [ABSTRACT FROM AUTHOR]

Female survivors of young adult (YA) cancers are at risk of fertility impacts following cancer treatment. For these women, fertility-related distress is both prevalent and persistent. Yet there is little research regarding survivors' perspectives on alternative family-building options, particularly adoption. This exploratory secondary data analysis analyzed semistructured interviews and explored survivors' views of adoption. Overall, female YA survivors reported openness to adoption as a possible substitute for biological conception and an alternative to fertility preservation. It is imperative that this population receives support in decision-making around and consideration of the unique barriers to adoption for cancer survivors. [ABSTRACT FROM AUTHOR]

Purpose: Empowering adolescents and young adult (AYA) patients to be involved in cancer responsibilities (e.g., remembering medications), as opposed to solely relying on caregivers, may have important short- and long-term benefits for development and disease management. This study explored perceptions of AYA engagement with cancer-related responsibilities and plans for transferring these responsibilities from caregivers to AYAs. Methods: A total of 30 AYA-caregiver dyads (including 11 early adolescents, 10 adolescents, and 9 young adults who were receiving chemotherapy and/or radiation) jointly completed a semi-structured interview. Interviews assessed the present allocation of cancer responsibilities within the family, how cancer responsibilities were divided this way, and prompted a dyadic discussion to draft a plan to transfer a responsibility to the AYA in the future. Directed content analysis techniques were used to identify and organize relevant themes. Results: Themes showed that (1) cancer responsibilities were initially assumed "naturally" by caregivers, without much formal discussion; (2) greater AYA involvement in cancer care reflected AYA (e.g., age, willingness) and caregiver factors (e.g., knowledge/skills, anxiety); (3) over time, dyads mutually prioritized AYA engagement with cancer care; and (4) the need for more proactive clinical support with transferring care tasks to AYAs. Discussion: Caregivers play a key role in managing cancer care with or for AYAs, with the allocation of these responsibilities being influenced by several factors that can shift over time. Dyads typically viewed the transfer process as important but desired more clinical support. This reflects a potential self-management care gap to address in future studies and dyadic interventions. [ABSTRACT FROM AUTHOR]

The health of breast cancer survivors is a global concern. It is crucial to adopt a holistic approach when understanding their journey from illness to wellness in order to ensure that the transition is as smooth as possible. This study focused on the experiences of Muslim women who had overcome breast cancer and were adapting to life post-treatment. Snowball sampling was used to select the participants for this qualitative study. Fifteen women who had successfully completed breast cancer treatment and been declared cancer-free were interviewed. These interviews were semi-structured, using open-ended questions to explore their experiences in-depth. The interviews were conducted by phone, and the data were analyzed using qualitative content analysis. The study identified four main themes, nine subthemes, and 41 codes. The main themes were as follows: (a) a life changed by cancer and the difficulties encountered; (b) transition from active treatment to treatment-free living; (c) coping mechanisms; and (d) future hopes and expectations. The findings highlighted the survivors' desire to move past their experience of cancer and normalize their lives, as well as emphasizing their need for support. The participants shared detailed accounts of their journey, the obstacles they encountered during this transition, and the critical role of religion and spirituality in overcoming these challenges. Understanding and effectively managing the experiences of women after breast cancer treatment is vital not only for improving survival rates but also for facilitating their healing process. [ABSTRACT FROM AUTHOR]

To investigate the palliative care experiences of Samoan patients with cancer and the impact these experiences have on their quality of life. Methods: This qualitative interview study was part of a larger study that interviewed19 participants recruited among patients with cancer registered with Samoa Cancer Society, or patients recently discharged from the main tertiary hospital in Samoa. Interview transcripts were reviewed, and the research team identified the key palliative-care-related themes. Results: Analysis led to the generation of the following key themes: living with pain; resource constraints; support from family and faith; and interactions with healthcare professionals. Most participants were experiencing unresolved pain as a result of poor health knowledge, lack of access to medications and practical issues, such as financial limitations and lack of transport. Participants also reported a lack of resources, including financial constraints, as a significant barrier to effective healthcare. Sources of support for patients with cancer were most commonly strong family relationships and religious faith. Although it was difficult for the participants to access care from healthcare professionals, they found that honest communication about their condition was comforting. However, they were frustrated if they felt communication was unsatisfactory. Conclusion: This study provides much needed evidence on the issues that affect the quality of life patients with cancer receiving palliative care and their families in Samoa. It also highlights the intersectionality of these issues and how this compounds the patient experience. Practical recommendations for improving palliative care lie in a few key areas, including a need for improved access to opioids and support for family caregivers. However, from a systemic perspective, the way forward should lie in harnessing the strengths of Samoan culture, including the strong sense of family and the role of religion, to provide support and care for palliative patients. [ABSTRACT FROM AUTHOR]

People with significant mental health difficulties (SMHD) experience inequities in cancer care. This study aims to deepen understanding of cancer care for individuals with SMHD. We conducted semi-structured interviews with seven individuals with SMHD regarding their experiences accessing and engaging with cancer care from August 2021 to February 2022. Data were analyzed using thematic analysis where both inductive and deductive coding was adopted through the lens of the socio-ecological model (SEM) as a theoretical framework. The main themes included intrapersonal, interpersonal and organizational barriers and facilitators to care with a specific focus on modifiable factors related to cancer care delivery. This study provides further evidence for promoting collaborative mental health and cancer care delivery to prevent inequalities in cancer care for patients with SMHD. Adopting an interdisciplinary, team-based approach to cancer care and help with patient navigation across services are potential factors in improving cancer care for individuals with SMHD. [ABSTRACT FROM AUTHOR]

The purpose of this study was to transcreate a manualized cognitive-behavioral therapy (CBT) intervention to address depression and anxiety among Hispanic cancer survivors. Stakeholders reviewed the CBT workbook for language, content, and cultural relevance. We designed semi-structured interview guides to elicit intervention feedback. Stakeholder participants were Hispanic cancer survivors (n = 4), bilingual mental health providers (n = 2), and oncology professionals (n = 4). Transcreation was conducted by initial translation of the workbook followed by incorporation of stakeholder feedback. A bilingual (Spanish and English) interviewer conducted stakeholder interviews. The study team discussed themes/suggestions before refining the workbook. Stakeholders reported enthusiasm for the intervention. We gathered significant feedback regarding wording, images, and resources for the workbook. Development of culturally appropriate mental health resources for Hispanic cancer survivors is critical. By broadening research on psychosocial care to the Hispanic population, we increase the reach of evidence-based psychological care. Future research should fully evaluate the adapted CBT intervention among Hispanic survivors. [ABSTRACT FROM AUTHOR]

Few studies have examined the distinct reproductive concerns (RC) of men and women in the adolescent and young adult (AYA) cancer patient population. The purpose of this mixed-methods study was to explore and differentiate the RC of AYAs. Participants completed the Reproductive Concerns After Cancer (RCAC) scale and participated in a semistructured interview. Interviews were deductively coded based on an analytic schema derived from the RCAC. After identifying participants through the electronic health record, 27 younger AYAs, ages 12–25, enrolled in the study. Four inductive themes emerged and differed by gender. These include differential temporality, acceptance, and openness to alternatives, partner influence, and parental/guardian influence. AYA men reported fewer RC (M = 49.4, SD = 9.6) compared to AYA women (M = 56.8, SD = 8.4). Oncofertility care providers are advised to account for short- and long-ranging concerns based on AYAs' gender. Future evaluations of patient-reported outcome measures specific to AYA RC are recommended. [ABSTRACT FROM AUTHOR]

The end of treatment is known to be a particularly challenging time for many cancer survivors as they transition to coping with their condition independently. They may engage in health behaviours, such as implementing drastic dietary changes to manage the side effects of treatment they have undergone or as a way to assuage their anxiety. Understanding cancer survivors' heightened preoccupation with healthy eating is therefore fundamental to our understanding of the psychological phenomenology of cancer. This study explored how people who have developed a heightened preoccupation with healthy eating after a cancer diagnosis make sense of this change. Eight participants were recruited through social media. They each engaged in a semi-structured interview over Zoom concerning their changed relationship with food following cancer. Their accounts were then analysed using interpretative phenomenological analysis (IPA). The article focuses on four group experiential themes arising from the analysis: Open and Enlightened About Food, Becoming a Better Me?, Developing a New Passion for Nutrition, and Becoming Consumed by Food. The themes that arose from the analysis speak to the experience of becoming a 'better' person from having lived through cancer and developed a new relationship with food. Instead of seeing illness as a loss, several of the participants reported a positive shift linked to having developed an interest in healthy eating, something which became central to their identity. However, others experienced their new engagement with healthy eating as a preoccupation that engulfed them. These findings are discussed in light of existing theory and research, and their clinical implications are outlined. Areas for future research are also suggested. [ABSTRACT FROM AUTHOR]

Background: To date, there is little understanding of how caring during advanced cancer can be a transformational experience for personal becoming for family caregivers (FCGs). FCGs experience personal becoming as they create their own meaning of health and illness and choose patterns relating to the self-identity of the past while reaching forward into the unknowns. Gaining greater insight into a potentially positive aspect of cancer caregiving can contribute to FCG well-being and quality of life. Objectives: This article identifies I-Poems within cancer caregiver narratives and explores themfor themes of personal becoming. The narrative environment created space for FCGs to construct and share their voices; at the same time, the analytic method of poetic inquiry provided the voice of the FCGs to be seen, heard, and contextually explored. Methods: As a secondary analysis, we used five cancer caregiver narrative texts obtained from the primary study to create individual I-Poems. Each of the I-statements within the cancer caregiver narrative texts was lifted and repositioned into a poem format while retaining the chronological order and voice of the participant. We then explored the I-Poems for converging themes of personal becoming as emerged from the primary narrative--thematic analysis. Results: I-Poems were created from each of the five participant caregivers' narratives and then explored for themes of personal becoming. Each of the participant stories is briefly introduced, followed by their I-Poem. We found that the I-Poems converged with emergent themes and provided a first-person representation of their caring journey and transformation of being. Discussion: I-Poems are a postmodern form of poetic inquiry that can be used alongside thematic analysis to explore personal meaning of caring for someone with advanced cancer and how FCGs experience personal transformation of self. Although we found I-Poems to be a meaningful and useful form of analysis for some narrative data, we propose an evolved genre of poetic inquiry--We-Poems--to be used in dyadic nursing research and with FCGs who are in partnered relationships. [ABSTRACT FROM AUTHOR]

Background: Animal-assisted intervention (AAI) involving live visits with canines shows strong promise to improve quality of life (QOL) in hospitalized youth with cancer or blood disorders. The emerging field of virtual AAI allows access to AAI regardless of setting and extends to children at home. Youth and Pet Survivors™ (YAPS) is a novel form of virtual AAI with dog and cat pen pals who share a diagnosis of cancer or serious illness. Little is known about how exchanging letters with animals with a shared diagnosis influences perceived QOL, and how the human–animal bond (HAB) is expressed in letter narratives. Method: A thematic narrative analysis approach was used to analyze a secondary dataset consisting of letters and interviews from children in YAPS. The research team designed a conceptual framework to guide the analysis, integrating concepts of perceived QOL, the HAB, and emotional social support. Results: Collectively, the letter and interview texts illustrated cocreated stories of the HAB. Themes included the virtual HAB as a mirror, constructing identity in the context of the HAB, expressions of the mutuality of the HAB, happiness with having a pen pal, illness story, and connection to normalcy. Answers to research questions operationalize the influence of virtual AAI. Discussion: Having an animal pen pal improved perceived QOL and was a potent source of emotional social support across the illness trajectory, supporting YAPS as a nurse-led intervention for facilitating adjustment to illness. This study adds a conceptual framework and scientific evidence to the emerging field of virtual AAI. [ABSTRACT FROM AUTHOR]

Objective: This study aims to evaluate the effectiveness of the Online Psycho-Oncology Counseling (OPC) in reducing distress levels among cancer patients. Methods: The research employs a paired sample t-test analysis to compare distress scores before and after the intervention. The study includes 30 solid tumor patients aged 30-59, undergoing cancer treatment. Distress levels were measured using the Distress Thermometer before and after the OPC intervention. Paired distress scores were computed for each participant, and a paired sample t-test was conducted to assess the statistical significance of the observed changes. Result: A statistically significant reduction in distress scores post-OPC intervention (t-value = 3.657, df = 29, p < 0.05) was observed. The mean distress score decreased from 5.67 ± 1.093 before OPC to 4.77 ± 1.675 after OPC. Importantly, 26.6% of participants shifted from high to low distress levels. The findings suggest that the Online Psycho-Oncology Intervention is effective in alleviating distress among cancer patients. The paired sample t-test provides robust statistical evidence supporting the positive impact of OPC on psychological well-being. Additionally, semi structured interview schedule was followed to explore the feasibility and satisfaction of the OPC program. Likert scale and thematic analysis was followed to analyze the qualitative data. Conclusion: Further research with larger cohorts and extended follow-up periods is recommended to enhance the understanding of the long-term effectiveness of psycho-oncology interventions in the digital realm. [ABSTRACT FROM AUTHOR]

A diagnosis of a chronic illness, such as cancer, can lead to a crisis in one's life. Although cancer patients face many biopsychosocial challenges, the literature has pointed to resilience as a key factor in coming to terms with the diagnosis and treatment. Though resilience has been discussed in various disciplines, and also from a socio-cultural perspective, there is still no universal consensus about its defining features. Furthermore, most studies have employed a quantitative approach in the understanding of what causes resilience. This qualitative study discusses the results of interviews among 18 Malaysian women with breast cancer, exploring what made these woman resilient. A thematic analysis uncovered seven themes related to the participants pathways towards resilience: drastic changes of body-image; self-reflection; spiritual resources; restoration of confidence; informal and formal support; and life appreciation. This study is vital to understanding the impact that resilience has on the experience of women with breast cancer. [ABSTRACT FROM AUTHOR]

Background: An accurate perception of death risk is a prerequisite for advanced cancer patients to make informed end-of-life care decisions. However, there is to date no suitable scale to measure death risk perception. This study was to develop and psychometrically test the death risk perception scale (DRPS) for advanced cancer patients. Methods: Process of instrument development and psychometric evaluation were used. First, qualitative research, a literature review, brainstorming, a Delphi study, and cognitive interviews were conducted to construct a pretest scale of death risk perception. Second, a scale-based survey was administered to 479 advanced cancer patients. Item, exploratory factor, and confirmatory factor analyses were employed to optimize the scale. The Cronbach's alpha was calculated as a reliability analysis. The validity analysis included construct, convergent, discriminant, and content validity values. Results: A three-dimension, 12-item scale was developed, including deliberative, affective, and experiential risk perception. The confirmatory factor analysis supported the three-factor model with satisfactory convergent and discriminant validity levels. The Cronbach's alpha coefficient for internal consistency was 0.807 and scale-level content validity index was 0.98. Conclusions: The 12-item DRPS is a reliable and valid instrument for assessing the level of death risk perception in advanced cancer patients. More studies are needed to examine its structure and robustness prior to use. [ABSTRACT FROM AUTHOR]

Background: Cancer is a disease that transcends what is purely medical, profoundly affecting the day-to-day life of both patients and family members. Previous research has shown that the consequences of cancer are greatly aggravated in patients at the end of life, at a time when they must also grapple with numerous unmet needs. The main objective of this study was to obtain more in-depth insight into these needs, primarily in patients with end-stage cancer nearing death. Methods: Semi-structured interviews were conducted in Spain with cancer patients at the end of life (n = 3) and their family members (n = 12). The findings from the interviews were analyzed using qualitative thematic analysis and a grounded theory approach. Results: Four major themes emerged from the interviews that explored the needs and concerns of patients with cancer at the end of life: (1) physical well-being (2) emotional well-being (3) social well-being and (4), needs relating to information and autonomous decision-making. The interviews also shed light on the specific needs of family members during this period, namely the difficulties of managing increased caregiver burden and maintaining a healthy work-life balance. Conclusions: A lack of support, information and transparency during a period of immense vulnerability makes the end-of-life experience even more difficult for patients with cancer. Our findings highlight the importance of developing a more in-depth understanding of the needs of this population, so that informed efforts can be made to improve palliative healthcare and implement more comprehensive care and support at the end of life. [ABSTRACT FROM AUTHOR]

The study aimed to explore experiences of encounters with health care professionals among patients receiving palliative cancer care in specialist palliative care inpatient units. A qualitative explorative study design was conducted in a specialist palliative care inpatient setting. Data collection was implemented using semi-structured individual interviews (20 palliative care cancer patients) and analysed with inductive content analysis. Palliative care patients experienced both meaningful and disrespectful encounters with healthcare professionals. The meaningful encounters encompassed authentic and supportive experiences, while the disrespectful encounters included indifferent and inadequate experiences. Caring for a patient receiving palliative care requires care beyond tending to a patient's physical needs. Patients should be encountered holistically and as equal human beings without highlighting their roles as patients. The healthcare professionals and the organisations should also acknowledge the importance of time and effort spent for encounters and conversations with the patients instead of concentrating resources mainly on physical care. [ABSTRACT FROM AUTHOR]

Background: Very few studies have compared different diagnostic approaches to diagnose depression in patients with cancers. Aim: To compare the different diagnostic approaches used for diagnosing depression in patients with cancers. Methodology: This cross-sectional study included 200 patients (diagnosed with cancer at least 3 months prior to recruitment) attending the outpatient services who were assessed on diagnostic and statistical manual, fifth edition (DSM-5) criteria for depression. Additionally, these patients were also assessed using the inclusive, exclusive, and substitutive criteria for depression using a semistructured interview. Patients completed Patient Health Questionnaire-9 (PHQ-9). Results: The mean age of the patients was 50.28 years (S.D. M14.11). Females outnumbered males. The mean age of onset of malignancy was 47 years (S.D 14.03), and the mean time since diagnosis of cancer was 35.45 years (S.D 36.87). The prevalence of depression was the highest (38.5%) when estimated using the PHQ-9 and was the lowest (21.5%) when assessed using exclusive criteria for depression. All approaches had high degree of concordance with the DSM-5 criteria for depression. Conclusion: A significant proportion of patients with cancer suffer from depression, and the prevalence is influenced by the diagnostic method. [ABSTRACT FROM AUTHOR]

Background: People living with mesothelioma have a high symptom burden that can affect dietary intake and the development of malnutrition, subsequently impacting on patient‐related and treatment outcomes. The present study aimed to develop a better understanding of the experiences of diet and appetite in people living with mesothelioma and their informal carers. Methods: Twenty‐three participants took part in semistructured interviews including 12 people living with mesothelioma (10 pleural and 2 peritoneal) aged 56–83 years and 12 informal carers, predominantly their spouses. Open ended questions focussed on experiences of appetite and diet, as well as approaches to maintain adequate food intake. Thematic analysis was applied. Results: Four themes were generated that included unintentional weight loss and poor appetite during diagnosis and when undergoing medical intervention. Participants managed their appetite and diet by taking each day at a time and this was influenced by the physical and emotional experiences of mesothelioma. The informal carer took on the lead role of managing their relatives' diet and implemented their own nutritional strategies and there were challenges with dietary advice. Conclusions: Appetite was viewed as a multidimensional experience and was grounded within the biopsychosocial model. The findings offer important insights into opportunities informing the development of effective interventions that provide meaningful benefits for individuals living with mesothelioma and their family. Key points: Weight loss and appetite problems are common in mesothelioma and comprise a multidimensional experience.Better management of patient's symptoms may improve appetite.There is scope to develop effective interventions that provide meaningful benefits for people living with mesothelioma and their family. [ABSTRACT FROM AUTHOR]

Purpose: To examine the impact of financial costs on fertility preservation decisions among female young adults (YAs) with cancer. Methods: Female YAs (N = 18; aged 21–36) with a history of cancer and oncology providers (N = 12) were recruited from an National Cancer Institute-designated comprehensive cancer center in a state without insurance coverage for fertility preservation. YAs and providers completed individual interviews and a brief online assessment. Qualitative description using thematic analysis was used to identify, analyze, and report common themes. Descriptive statistics was used to characterize the sample. Results: Female YAs and oncology providers highlighted the critical role that high out-of-pocket costs play in YAs' fertility preservation decisions along with the value that enhanced insurance coverage for fertility preservation would have for increasing female YAs' access to and utilization of fertility preservation. Although providers were concerned about preservation costs for their patients, they reported that their concerns did not impact whether they referred interested female YAs to reproductive specialists. Oncology providers expressed concern about inequities in utilization of fertility preservation for female and racially/ethnically minoritized YAs that were exacerbated by the high out-of-pocket fertility preservation costs. Conclusion: Cost is a significant barrier to fertility preservation for female YA cancer patients. Female YAs of reproductive age may benefit from decision support tools to assist with balancing the cost of fertility preservation with their values and family building goals. Policy-relevant interventions may mitigate cost barriers and improve access to care. [ABSTRACT FROM AUTHOR]

Simple Summary: Despite advances in head and neck cancer control, survivors encounter significant difficulties accessing survivorship care in the USA. We conducted a qualitative study aimed to better understand their experiences and identify unmet needs. Fifteen long-term head and neck cancer survivors were interviewed, where themes around chronic emotional distress, fatigue, and disruptions in daily life emerged across the focus group. Secondary issues included sleep problems, cognitive difficulties, and other health conditions. Surprisingly, physical symptoms like pain and changes in appetite were less discussed. These findings underscore the need for tailored holistic multi-dimensional cancer survivorship programs that address physical, emotional, and spiritual well-being. The study highlights the importance of increased awareness and comprehensive long-term support to prioritize and enhance quality of life for the head and neck cancer survivorship community. Improved rates of cancer control have increased the head and neck cancer survivor population. Cancer survivorship clinics are not widely available in the USA, and longitudinal supportive care for patients undergoing multimodal therapy has not advanced at a pace commensurate with improvements in cancer control. Consequently, a large head and neck cancer survivor population whose quality of life may be chronically and/or permanently diminished presently exists. This lack of awareness perpetuates under-recognition and under-investigation, leaving survivors' (mostly detrimental) experiences largely uncharted. We conducted a qualitative exploration of survivors' experiences, aiming to unpack the profound impact of late systemic symptoms on daily life, encompassing work, relationships, and self-identity in the head and neck cancer survivor community. The study included 15 remitted head and neck survivors, ≥12 months from their final treatment, who participated in semi-structured interviews conducted by a medical oncologist. Data analysis comprised qualitative thematic analysis, specifically inductive hierarchical linear modeling, enriched by a deductive approach of anecdotal clinical reporting. Results highlighted that 43.36% of all quotation material discussed in the interviews pertained to chronic emotion disturbance with significant implications for other domains of life. A central symptom cluster comprised impairments in mood/emotions, daily activity, and significant fatigue. Dysfunction in sleep, other medical conditions, and cognitive deficits comprised a secondary cluster. Physical dysfunctionality, encompassing pain, appetite, and eating, and alterations in experienced body temperature, constituted a tertiary cluster, and perhaps were surprisingly the least discussed symptom burden among head and neck cancer survivors. Symptoms causing heightened long-term survivor burden may be considered epiphenomenal to central physical dysfunctionality, albeit being presently the least represented in cancer survivor care programs. Moving forward, the development of targeted and multi-dimensional treatment programs that encompass physical, psychosocial, and spiritual domains are needed to increase clinical specificity and effective holistic long-term solutions that will foster a more compassionate and informed future of care for the cancer survivorship community. [ABSTRACT FROM AUTHOR]

This study aims to investigate the phenomenon of hope in adolescents diagnosed with cancer and examine adolescents' lived experiences of hope. The study was conducted between November 2022 and March 2023. The study used a phenomenological-visual qualitative research design with 20 adolescents in the pediatric oncology ward. The purposive sampling method was used in the study. Data were collected using "Descriptive Characteristic Form," "Semi-structured Interview Form," "Drawing Technique," and "Mutual Storytelling Technique". The adolescents were instructed, "Let us draw our hopes," and asked to draw pictures. Each adolescent was interviewed about the drawings and asked four semistructured questions. Audio recordings of the interviews were made and transcribed. A hermeneutic phenomenological approach was used in the analysis of the data. Two main themes and four subthemes were identified in the study. Metaphorical and conceptual context was included in the theme of symbolizing and linking hope. Two subthemes, facilitators and barriers, were identified in the main theme of rooting hope. The study sheds light on hope experiences in adolescents receiving cancer treatment and guides healthcare professionals. [ABSTRACT FROM AUTHOR]

Introduction: The Covid‐19 pandemic dramatically altered the way cancer care services were accessed and delivered, including for colorectal cancer (CRC). In the United Kingdom, patients were discouraged from presenting in primary care, many consultations took place remotely, investigative procedures and screening programmes were temporarily suspended, and fewer operations and treatments were delivered. People had to face the practical consequences of having cancer during a pandemic and navigate never before seen pathways, often alone. We examined the experience of being diagnosed and treated for CRC during the pandemic, and the implications of this on people's cancer journeys. Methods: Semi‐structured interviews were undertaken with people diagnosed with CRC during the Covid‐19 pandemic (January 2020–May 2021), in the North East of England. An iterative topic guide was used during interviews, which took place remotely (telephone or Zoom), were audio recorded, pseudo‐anonymised and transcribed. Initial transcripts were independently coded by two researchers, and a code 'bank' developed for application across transcripts. Development of themes and overarching analytical constructs was undertaken collaboratively by the research team. Results: Interviews were conducted with 19 participants, analysed and four key themes identified: (1) The relative threats of Covid‐19 and Cancer were not comparable, with cancer seen as posing a far greater risk than Covid‐19; (2) Remote consultations were problematic, affecting patients' abilities to build rapport and trust with clinicians, assess nonverbal communication, and feel able to disclose, comprehend and retain information; (3) Stoma follow‐up care was seen to be lacking, with long wait times for stoma reversal experienced by some; Finally, (4) Being alone during consultations negatively impacted some peoples' abilities to absorb information, and left them without the support of loved ones at an emotionally vulnerable time. However, some participants preferred being alone at certain points in their pathways, including receiving a diagnosis, and most frequently when receiving in‐patient treatment. Conclusion: Being alone brought unexpected benefits, absolving people from undertaking emotions work for others, and instead focus on their recovery, however, remote consultations negatively impacted patients' experiences. This study highlights the complex benefits and burdens of pandemic‐located cancer journeys, including how these shifted at different points across cancer pathways. Patient or Public Contribution: Lorraine Angell, a cancer survivor, has been central to this study from idea conception, contributing to: development of study focus and design; securing funding; production of patient‐facing materials; development of interview topic guides; analysis and interpretation of data; and drafting of key findings and manuscripts. [ABSTRACT FROM AUTHOR]

Introduction: Despite significant advances in the management of lung cancer, patients continue to experience a high burden of unmet need impacting quality of life and outcomes of care. Achieving value‐based health care, where investment is targeted to services that deliver optimal experience and outcomes of care relative to the cost of delivering that care, requires attention to what people value most in meeting their needs. To date there has been little attention to what matters most to patients with lung cancer (i.e., what they value) as a component of achieving value‐based cancer care. This qualitative study was undertaken to investigate components of care valued by people with lung cancer in Australia. Methods: This qualitative study used semistructured interviews with 23 people with lung cancer. Participants were recruited using a purposive sampling strategy from two metropolitan tertiary public health services. Data collected included demographic characteristics and patient perspectives regarding their priority concerns and components of care identified as most valuable in meeting their needs. Demographic characteristics of participants were analysed descriptively, and qualitative data were analysed thematically using Interpretive Description. Results: Data analysis generated three key themes: valued components of care; benefits of receiving valued care components and consequences of missed opportunities for care. The components of care valued by patients reflect the core dimensions of cancer supportive care, with particular emphasis on ongoing opportunities for consultation (screening for unmet needs) and provision of person‐centred information. The facilitation of trust between patients and their treating team, as a consequence of having these valued components evident in their care, was identified as a key characteristic of value‐based care. Conclusions: This study has identified valued components of care described by people with lung cancer. Importantly, the care components identified have been proven to improve access to and coordination of care, and demonstrate the importance of integrating supportive care into care provision to achieve value‐based cancer care. Patient or Public Contribution: This study was informed by perspectives of lung cancer patients who participated in semistructured interviews. We acknowledge that this contribution does not meet the criteria for patient and public involvement in research as defined by Health Expectations, but this study forms part of a larger program of cancer supportive care work being undertaken by this team, where comprehensive consumer engagement and co‐design approaches are embedded in our work. [ABSTRACT FROM AUTHOR]

Background: Supported self‐management can improve clinical and psychosocial outcomes in people with cancer; the considerations required to implement self‐management support (SMS) for people living with a lower‐grade glioma (LGG)—who often have complex support needs—are not known. We aimed to identify and understand these implementation considerations through the lens of normalisation process theory (NPT), from the perspectives of healthcare professionals (HCP) and people with LGG. Methods: We conducted semistructured interviews with HCPs who support adults with brain tumours (n = 25; 12 different healthcare professions), and people with LGG who had completed primary treatment (n = 28; male n = 16, mean age 54.6 years, mean time since diagnosis 8.7 years), from across the United Kingdom. Interviews were transcribed and inductive open coding conducted, before deductively mapping to constructs of NPT. We first mapped HCP data, then integrated data from people with LGG to explore alignment in experiences and perspectives. Results: We generated supporting evidence for all four NPT constructs and related subconstructs, namely: 'Coherence', 'Cognitive participation', 'Collective action' and 'Reflexive monitoring'. Data from HCPs and people with LGG clearly demonstrated that effective SMS constitutes a collective activity. Key implementation considerations included: ensuring awareness of, and access to, support; building strong HCP‐support recipient relationships; and careful inclusion of close family and friends. We identified pertinent challenges, such as identifying support needs (influenced by the extent to which those with LGG engage in help‐seeking), resistance to support (e.g., technology literacy), training for HCPs and HCP cooperation. Conclusions: This study demonstrates the collective nature of, and provides insight into the individual roles within, supported self‐management. We outline considerations to operationalise, sustain and appraise the implementation of SMS for people with LGG. Patient or Public Contribution: People with brain tumours, and informal caregivers, were involved in the development of information materials and topic guides to ensure accessibility and pertinence. They also had opportunities to comment on interview findings. [ABSTRACT FROM AUTHOR]

Background: Patients with lung cancer suffer from physical, psychosocial and particularly emotional challenges. Twenty‐five percent of patients with lung cancer are offered surgery as a potential cure. Nevertheless, 40% of surgically treated patients will experience recurrence. Paradoxically, research shows a dominant narrative of operable lung cancer patients 'being lucky', which silences other narratives about suffering, worries and emotional challenges. Aim: To explore narratives about operable lung cancer, particularly emotional reactions to illness and suffering in these narratives. Methods: A qualitative design was applied. Six women and four men diagnosed with operable lung cancer were included from one university hospital in Denmark and interviewed 1 month after surgery using active interviews. The interviews were subject to dialogical narrative analysis. The theoretical foundation is social constructivism, with socio‐narratological inspiration. Findings: A typology of three emotional narratives emerged: 'staying cool', 'staying calm' and 'staying positive'. All three types of narrative are characterised by managing emotional reactions. Staying cool is characterised by not showing emotional reactions; staying calm narratives acknowledge emotional reactions, but that they need to be managed so that they do not burden relatives; and the last, staying positive, is characterised by managing emotional reactions in a positive direction. Together this typology of three emotional narratives revealed that operable lung cancer patients are under normative pressure from these socially preferred narratives of ideal emotional reactions to lung cancer. Conclusion: A typology of three emotional narratives were identified and can be called 'feeling rules' that guide patients after lung cancer surgery to manage their emotions. Consequently, if patients do not live up to these three emotional narratives of staying cool, calm and positive, they may be socially isolated and restricted from access to support. [ABSTRACT FROM AUTHOR]

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Background: Clinical trial participation in the United States remains low, hampering development of and access to novel therapies. To assist patients and their oncologists with identifying relevant and available blood cancer clinical trials and reducing enrollment barriers, The Leukemia & Lymphoma Society created its Clinical Trial Support Center (CTSC), a free, telephone-based service led by nurse navigators. Objectives: To understand patient-and caregiver-reported perceptions and experiences with this navigation service. Methods: Eligible participants were English-speaking, adult blood cancer patients or caregivers who resided in the United States or Canada and had a telephone interaction with the CTSC between May 2018 and April 2019. A 53-item survey assessed demographics, clinical characteristics, experiences, satisfaction, and enrollment outcomes. Interviews were conducted with a subset of survey respondents to capture individual narratives. Results: Of 474 eligible patients/caregivers, 131 completed the survey (28% response rate). Most patients/caregivers reported contacting the CTSC to identify a trial they might be eligible for (81.7%), for general information about clinical trials (78.6%), about a trial recommended by a healthcare provider (21.4%), or one found through another source (19.1%). In addition to seeking help with identifying trials and learning about trials, patients/ caregivers reported discussing with the nurse navigator insurance/coverage issues (25%) and how to talk with their healthcare provider about trial participation (24%). More than 93% of respondents reported that the nurse navigator gave them the information and support needed to make an informed decision about trial participation. After speaking to a nurse navigator, nearly 29.6% reported enrolling in a trial; the most common reasons for nonenrollment were that their doctor did not recommend it (33.7%), not eligible for any existing trial (30.3%), no trial available at a convenient location (24.7%), and chose a different type or plan of treatment than offered by trial(s) (23.6%). Interview respondents (n=10) described how the navigation enhanced their sense of control over the treatment decision-making process. Conclusion: Amid an overwhelming treatment landscape and continued low clinical trial enrollment rates, this clinical trial navigation service effectively provides blood cancer patients and caregivers support with identifying relevant trial options and facilitating enrollment if the patient so chooses in collaboration with their healthcare team. Further inquiry is needed to understand how to integrate independent navigation programs such as this directly into clinical workflows so that more patients and oncologists can be assisted, especially among patients from groups underrepresented in clinical trials. [ABSTRACT FROM AUTHOR]

Background: Cancer disproportionately affects Hispanic populations, yet the preparedness of Hispanic caregiver–patient dyads facing cancer remains understudied. This study aims to identify essential components of preparedness needs and inform future psychosocial interventions for this demographic. Methods: Secondary analyses were conducted utilizing focus groups to develop a communication intervention for Hispanic patients and caregivers. Transcripts were qualitatively analyzed using NVivo v12 (2020). Results: Analysis revealed symptom management and treatment comprehension as pivotal aspects of preparation. Additionally, preparedness among our sample emerged by addressing the multifaceted dimensions of preparedness, including psychological, emotional, educational, familial, practical, financial, and spiritual aspects. Conclusions: Tailoring interventions encompassing diverse dimensions of preparedness can foster inclusivity and maximize their impact on supportive measures. This underscores the necessity for culturally sensitive approaches when delivering interventions supporting Hispanic individuals navigating the challenges of cancer. [ABSTRACT FROM AUTHOR]

(1) Background: Illness perception (IP) is an important psychological construct for couples dealing with cancer, which impacts health outcomes and the psychological adjustment to cancer. More research is needed to explore the traits of IP and the efforts of couples coping with cancer. Thus, this study was designed to explore the coping experiences and features of the IPs of couples dealing with cancer. (2) Methods: A total of 24 patients with colorectal cancer (CRC) and 20 spousal caregivers (SCs) participated in semi-structured interviews. All interviews were recorded digitally, transcribed, and analyzed by using an inductive thematic analysis. (3) Results: Two themes (individualized and predominant IP; IP sharing and restructuring) were developed. A preliminary framework was formulated to illustrate the relations among subthemes and the relations between themes with an adjustment of a positive IP to CRC. In this framework, based on multiple sources and factors, the natural disparities formed the IPs of the partners of couples and determined the incongruence of IPs. The effects of IP incongruence on lives under the disease guided the three directions of coping approaches (i.e., information and available support, appropriate disclosure and reflection, and leaving the CRC diagnosis behind) which were adopted by couples dealing with CRC to share and restructure the IP with their spouses for effective dyadic coping. (4) Conclusions: This study provides insights to healthcare providers into the experiences of couples dealing with CRC and the development of couple-based IP intervention programs: (a) it initially provides adequate factual knowledge for enhancing beliefs in the ability to control illness, (b) encourages illness-centered conversations and disclosure regarding thoughts and emotions for promoting positive congruence of IP between the partners of couples dealing with a hard dilemma, and (c) guides couples to perceive positive changes and explore the illness's meaning. Understanding each theme of personalized IP and adopting effective IP coping approaches can help guide couples dealing with CRC to efficiently promote constructive IP and better health outcomes. [ABSTRACT FROM AUTHOR]

Background: Primary bone and soft tissue sarcoma of the spine are rare and account for less than 0.2% of all neoplasm incidences. Following a patient and public involvement event, the need to explore patient support pathways was identified, which initiated this service evaluation project. Aim: To determine the acceptability and feasibility of a peer-to-peer support project among people using the spine sarcoma service. Methods: Users were paired and introduced via Microsoft Teams. Quantitative and qualitative data both pre- and post-introduction of a buddy were collected. Findings: Service users felt that, although they would have preferred having a buddy at the time of their diagnosis, being allocated a buddy made them feel reassured and better supported. Conclusion: The project was well received and preliminary data are encouraging. Therefore, due to early findings from the first participants, the service is continuing to roll out the buddy programme. [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]

Breast cancer survivors may experience a variety of disabilities that could potentially compromise their independent functioning. This study aimed to examine their perspectives and experts on their functioning and interpret concepts with the International Classification of Functioning, Disability, and Health (ICF) and the Item-Perspective Classification Framework (IPF). Interpretive descriptive methods were used with in-depth interviewing with 16 breast cancer survivors and 22 experts using a semi-structured interview guide. The interviews were recorded, transcribed, and qualitatively analyzed using thematic analysis. The extracted data were linked to the ICF Core Set for Breast cancer and were interpreted by the IPF. Four main themes emerged to define the functioning of breast cancer survivors: body functioning, physical functioning, social functioning, and mental functioning. Three other factors were also categorized as modifiers of functioning personal, emotional, and environmental. The 592 extracted meaningful concepts were linked to 38 (47%) categories from the ICF: 16 Body Functions, 14 Activities and Participation, and 8 Environmental Factors. The IPF classified all the extracted concepts, and most rational appraisals fell in the biological (B) domain. The concepts that required emotional appraisal were classified in Psychology (P). Psychological and emotional factors were pivotal in defining functioning in patients with BC. Rehabilitation specialists need to consider a holistic approach to breast cancer survivor care that addresses physical functioning and social, emotional, and environmental factors that may affect their overall well-being. The findings suggest that rehabilitation interventions that aim to improve the functioning of breast cancer survivors should target a range of areas, including body functioning, physical functioning, social functioning, and mental functioning. It is important for rehabilitation professionals to consider personal, emotional, and environmental factors that influence the functioning of breast cancer survivors when designing interventions. Using the ICF Core Set for Breast Cancer and the IPF can help rehabilitation specialists better understand the functioning of breast cancer survivors and develop more effective interventions. [ABSTRACT FROM AUTHOR]

Simple Summary: Currently, there is very little data on survivorship-related issues after successful treatment by immune checkpoint blockade for an advanced cancer. The purpose of this study was to identify survivorship-related issues, with a focus on emotional distress, cognitive complaints, physical issues, impact on family dynamics, and care needs in survivors treated with immune checkpoint blockade therapy for an advanced cancer. We conducted semi-structured interviews and completed validated questionnaires with 70 survivors. We found that more than half of the cancer survivors had a clinical fear of cancer recurrence and that 18% had elevated cognitive complaints. We identified triggers related to severe emotional distress. Moreover, we found ongoing physical issues and unmet nutritional and emotional care needs. These results show that although patients are successfully treated, there are still ongoing psychosocial, physical, and cognitive issues and care needs that can be mitigated by routine screening and referrals to psychological services. Background: There is a need for a better understanding of survivorship-related issues in advanced cancer survivors treated with immune checkpoint blockade (ICB). The purpose of this study was to identify survivorship-related issues, with a focus on psychological distress, cognitive complaints, physical sequelae, impact on family dynamics, and care needs in unresectable, advanced cancer survivors treated with ICB. Methods: Semi-structured interviews and patient-reported outcome measures (PROMs) were conducted in survivors followed up at the University Hospital Brussels. We performed content analysis on the semi-structured interviews and analyzed the PROMs descriptively. Results: 70 cancer survivors (71.4%) consented to participate between July 2022 and November 2023. Clinical fear of cancer recurrence (FCR) was present in 54.3% of the cancer survivors, and 18.6% had elevated cognitive complaints. We identified triggers related to clinically important psychological distress, such as immune-related adverse events, the progression/recurrence of disease, difficulties in adjusting to life after treatment, and co-existing life stressors, alongside persistent physical issues and unmet psychological and nutritional care needs. Conclusion: Our results indicate the existence of persistent psychological, physical, and cognitive issues, and support the need for routine screening for FCR. The identified triggers related to severe psychological distress can aid clinicians in timely referring the patient, thereby enhancing survivorship care. [ABSTRACT FROM AUTHOR]

Cancer disrupts the social lives of adolescents and young adults (AYA). Social media may be a resource to engage with social networks, seek entertainment, and receive social support. However, some aspects of social media engagement may be emotionally burdensome and sensitive for AYA to navigate. The aim of this qualitative study was to contextualize the impact of cancer on AYA social media interaction. Eight AYA ages 15–21 years and recently diagnosed with cancer participated in a semi-structured interview. AYA were asked about their social media interactions, engagement habits, and online cancer-related disclosure. Interviews averaged 36 min in length and were de-identified and transcribed verbatim and analyzed using thematic analysis. Four salient themes emerged from the data: (1) AYA engage in active and passive social media use depending on the platform, (2) AYA social media habits change due to treatment experiences, (3) AYA evaluate and protect their self-image, privacy, and time, and (4) AYA access social support online and interpret its meaning in different ways. AYA reported using social media, but many altered their frequency and type of interaction after diagnosis. Some were comfortable sharing about cancer and continued to interact actively online; others felt protective and vulnerable, transitioning to media consumption, or withdrawing from use. While social media provided space to receive direct and indirect social support, AYA interpreted the meaning of support in complex ways. Social media may serve a variety of socio-emotional needs, but not all AYA will benefit from the same types of social media interaction. This study highlights the importance of talking to AYA with cancer about their social media interactions during treatment to better support their coping and adjustment. [ABSTRACT FROM AUTHOR]