Cancer-related pain experienced in daily life is difficult to communicate and to manage - for patients and for professionals.

OBJECTIVES: The aim of this study was to gain qualitative insight into cancer patients' experiences, explanations, and management strategies regarding their cancer-related pain (CP). METHODS: Seventeen patients with CP were interviewed using a semi-structured interview approach. Braun and Clarke's thematic analysis method was used to analyze the transcribed interviews. The patients all participated in cancer rehabilitation courses arranged by the research clinic at The Danish Knowledge Centre for Rehabilitation and Palliative Care. RESULTS: Three themes were identified: (1) Explaining CP: Patients found it difficult to explain how they experienced their pain. They lacked words, and they frequently used invasive metaphors such as "Pain feels like a heart attack" (2). Strategies and barriers to the management of CP: Initiatives provided by healthcare professionals (HCPs) were perceived as insufficient, and the patients missed guidance in both pharmacological and non-pharmacological approaches to pain management. Several saw medicine as unnatural for their body, and they focused on side effects and the medicine affecting their quality of life. (3) Responsibility for managing CP: A lack of responsiveness from the HCPs and taking on responsibility for pain management were experienced by several of the patients. The patients expressed uncertainty about whom to contact for help with the management of their CP. CONCLUSION: The patients' difficulties in explaining, understanding, and communicating their pain and pain management contributed to insufficient pain management. They were also uncertain about who had the responsibility to help them to achieve pain relief. These results share the evidence drawn from studies on patients with chronic non-cancer pain. This qualitative study highlights the need for having more focus on a common language and shared understanding between patients and HCPs. It also underpins the importance of HCPs to assume their responsibility to help patients manage their pain conditions.

Nursing Roles in Cancer Rehabilitation: An Integrative Review.

BACKGROUND: Because of cancer survivors' increased need for help and support, cancer rehabilitation should be an essential part of cancer treatment, where focusing on patients' individual needs is essential. OBJECTIVE: To provide an overview of existing evidence about nurses' roles and participation in cancer rehabilitation, based on both nurses' and patients' perspectives. METHODS: A systematic search was conducted in PubMed, CINAHL, EMBASE and Cochrane databases for studies published from January 2001-January 2022. Whittemore and Knafl's methodology for data extraction and synthesis was used, and PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) guidelines were followed. The review was registered in PROSPERO (CRD42021223683). RESULTS: Ten qualitative studies and 7 quantitative studies were included, encompassing 306 patients and 1847 clinicians (1164 nurses). Three nursing roles emerged: (1) relationship-forming, in which nurses described ongoing involvement in patients' rehabilitation and patients described nurses as trusted partners; (2) coordinating, in which nurses described a lack of time and resources and a focus on medical treatment, and patients described nurses as expert coordinators; and (3) follow-up, in which patients described nurses as good communicators and trusted partners in their follow-up, and nurses described their natural interest in patients' rehabilitation outcomes during follow-up. CONCLUSIONS: Patients were comfortable with nurses as trusted partners during cancer rehabilitation. Significant barriers such as lack of time, resources, and education about rehabilitation may negatively influence rehabilitation planning, implementation, and monitoring. IMPLICATIONS FOR PRACTICE: Clinicians can use the findings to improve cancer rehabilitation with the nurse as a central provider and conduct further research on the coordinating and follow-up roles.

Patient, Family Caregiver, and Nurse Involvement in End-of-Life Discussions During Palliative Chemotherapy: A Phenomenological Hermeneutic Study.

The aim of this study was to investigate current nursing practice related to end-of-life discussions with incurable lung cancer patients and their family caregivers from the perspectives of patients, family caregivers, and nurses in an oncology outpatient clinic. This phenomenological hermeneutic study included nine patients, eight family caregivers, and 11 nurses. Data were collected using participant observation, informal and semi-structured individual or joint interviews with patients and family caregivers, and focus group interviews with nurses. A Ricoeur-inspired approach was used to analyze the data. Three themes were identified: (a) content of end-of-life discussions, (b) timing of end-of-life discussions, and (c) challenges in end-of-life discussions. End-of-life discussions were seldom initiated; when they were, it was often too late. Discussions addressed treatment, place of care, practical/economic concerns, and existential matters. The physical environment at the outpatient clinic, lack of continuity, and nurses' instrumental task workloads and time pressure posed challenges to initiating end-of-life discussions.

The cost of living with cancer during the second wave of COVID-19: A mixed methods study of Danish cancer patients' perspectives.

PURPOSE: This study investigated experiences and levels of distress and resilience of Danish cancer patients during the second wave of the COVID-19 pandemic. METHODS: The mixed methods design included a subset of cancer patients who responded to a cross-sectional survey in May 2020. Data were collected through telephone interviews. The National Comprehensive Cancer Network Distress Thermometer (NCCN DT), and Connor-Davidson-Resilience Scale (CD-RISC2) were used to measure distress and resilience. Data were analysed by thematic analysis and descriptive statistics. RESULTS: Forty patients with lung, breast, colorectal and skin (melanoma) cancer were included; 65% were women. Mean age was 62.2 years (standard deviation [SD], 13.2). Most patients had curable disease (65%); 50% were in treatment and 50% in post-treatment follow up. The interviews revealed four themes: 1) the cost of living with cancer during COVID-19, 2) changes in cancer care delivery, 3) particularly vulnerable, and 4) importance of family support. Mean NCCN DT score was 2.3 (SD, 2.6) while the mean CD-RISC2 score was 7.25 (SD, 1.1). CONCLUSION: Despite drastic changes in daily life imposed by COVID-19 restrictions, Danish cancer patients had remarkably low levels of distress and high levels of resilience. Patients in active treatment, with comorbidities or elderly felt vulnerable. Family support was invaluable in critical times.

Patients and family caregivers report high treatment expectations during palliative chemotherapy: a longitudinal prospective study.

BACKGROUND: When discussing treatment options and future care, it is important to understand the expectations of patients and family caregivers related to palliative chemotherapy and to identify patterns in patients' quality of life. The study aims were to evaluate differences in treatment expectations and quality of life between patients with thoracic cancer (non-small-cell lung cancer, small-cell lung cancer and mesothelioma) who were < 70 and ≥ 70 years of age and receiving palliative chemotherapy and to assess family caregivers' treatment expectations. METHODS: A prospective longitudinal study included patients with thoracic cancer receiving outpatient palliative chemotherapy at a university hospital in Denmark and their family caregivers. Patients' treatment expectations and quality of life were assessed three times during treatment with a survey of treatment expectations and the Functional Assessment of Cancer Therapy - General questionnaire. Family caregivers' treatment expectations were assessed once. RESULTS: A total of 48 patients and 36 family caregivers participated between 2018 and 2019. No statistically significant age-related differences in treatment expectations and quality of life were identified. 28% of patients aged < 70 years and 7% of those aged ≥70 years expected a cure. Among family caregivers, 36% expected a cure. Across both age groups, mean total quality of life scores significantly decreased from 73.2 at first palliative chemotherapy cycle to 70.5 at third cycle (p = 0.02). No meaningful changes were found in quality of life within either age group. A subgroup analysis found no significant between-group differences in quality of life. Mean physical well-being score for all patients decreased from 20.3 at first cycle to 18.4 at third cycle (p = 0.03) and mean emotional well-being score decreased from 15.4 at first cycle to 14.6 at third cycle (p = 0.04). CONCLUSION: This study emphasizes the importance of initiating conversations about treatment expectations and paying attention to expectations that may differ by the age of the patient and between patients and family caregivers. Addressing treatment expectations among patients and family caregivers and monitoring quality of life among patients is important in clinical practice.