Carrying on with life as a lung cancer survivor: a qualitative study of Australian survivors' employment, finances, relationships, and healthcare experiences.

Background: With novel therapies, more individuals are living longer with lung cancer (LC). This study aimed to understand the impacts of LC on life domains such as employment, finances, relationships, and healthcare needs. Methods: Individuals 18+, diagnosed with LC, 6-24 months post-treatment were recruited through an Australian LC cohort study (Embedding Research and Evidence in Cancer Healthcare-EnRICH). Demographic, clinical, quality-of-life and distress data were obtained through the EnRICH study database. Participants completed telephone interviews. Qualitative data were analysed via Framework methods. Results: Twenty interviews (10 females) were conducted. Most participants were diagnosed with advanced LC (Stage III =8, Stage IV =6), and were on average 17 (range, 10-24) months post-diagnosis. Four themes related to "carrying on with life" as a LC survivor were identified: (I) the winding path back to work: those working pre-diagnosis discussed challenges of maintaining/returning to employment, and the meaning and satisfaction derived from work. (II) Vulnerability versus protection: managing the financial impacts of LC: wide variations in financial impacts, some described lost income and high healthcare expenses, others felt financially protected. (III) Connection and loneliness: navigating relationships as a survivor: some experienced lost friendships due to their diagnosis, others noted more meaningful connections. (IV) Still under the umbrella: healthcare during survivorship: participants noted the importance of ongoing oncology team connection and the vital role of cancer care coordinators. Conclusions: Many individuals living with LC want to "carry on" with life. Participants spoke of challenges and opportunities across life domains of relationships, work, and finances, and noted the importance of continued specialist healthcare throughout survivorship.

Application of a revised model for coping with advanced cancer to qualitatively explore lung cancer survivors' experiences of ongoing physical effects, novel treatments, uncertainty, and coping.

PURPOSE: Lung cancer remains underrepresented in cancer survivorship research. This study aimed to understand survivors' physical/psychological challenges, experiences of immunotherapy (IO) and targeted therapy (TT), and psychological adjustment through application of the Roberts et al. (2017) advanced cancer adaptation of Folkman and Greer's appraisal and coping model. METHODS: Adults 6-24 months post-initial treatment completion were recruited via an Australian cohort study. Participant demographic, clinical, quality of life, and distress data were obtained through the cohort database. Qualitative interviews were conducted and analyzed using Framework methods. Roberts et al. (2017)'s model informed data interpretation and presentation. RESULTS: Twenty interviews were conducted (10 females; average age 69 years). Participants' diagnostic stages varied (stage I = 2, stage II = 4, stage III = 8, stage IV = 6); most had received IO/TT (n = 14) and were on average 17 months (range 10-24) post-diagnosis. Three themes were identified and mapped to the Roberts' framework: (1) Ongoing illness events: most participants reported functioning well despite ongoing physical effects. Those on IO/TT reported side effects; some were unexpected/serious. (2) Adjusting to life with lung cancer: most expressed hope for the future while simultaneously preparing for disease progression. Those receiving IO/TT experienced uncertainty given limited survival information. (3) Learning to live with lung cancer: participants described emotion, problem, and meaning based on coping strategies. CONCLUSIONS: Findings may guide development of supportive care resources/interventions focused on uncertainty, IO/TT communication and decision-making, and coping. IMPLICATIONS FOR CANCER SURVIVORS: Many people with lung cancer are living well with their ongoing illness. Despite challenges, many survivors are adapting to issues as they arise and are maintaining a sense of hope and optimism.

Healthcare experiences of people with advanced colorectal cancer: A qualitative study.

PURPOSE: Qualitative research examining healthcare experiences and needs of people with advanced (metastatic or recurrent) colorectal cancer CRC-A is limited. This study aimed to fill this gap in CRC-A survivors treated with surgical or palliative chemotherapy, through a qualitative study. METHOD: Australian adults treated for CRC-A were recruited 0.5-2 years post-surgery or post-diagnosis of CRC-A (for palliative chemotherapy groups). Semi-structured telephone interviews, analysed via framework analysis, explored healthcare experiences. Demographic, clinical, and quality of life data characterised the sample and informed framework analyses. Data was compared against the Institute of Medicine's framework for quality healthcare. RESULTS: Interviews from 38 participants (22 female) of median age 59 years (range 27-84) revealed six overarching themes relating to the safety, effectiveness, timeliness, patient-centredness, efficiency, and equity of CRC-A care: 1) Early experiences influence later perceptions; 2) Trusting the system, trusting the professionals; 3) The benefits of multidisciplinary care co-ordination; 4) Feeling lost in follow-up; 5) Whose role is it anyway? Gaps in responsibility for survivorship care; and 6) Useful or useless? Perceptions of psychosocial support. CONCLUSIONS: Healthcare systems for CRC-A can be improved through delivery of repeated information, upskilling general practitioners and/or implementing written survivorship care plans or survivorship clinics, to ensure quality healthcare.

Fear of Cancer Progression and Death Anxiety in Survivors of Advanced Colorectal Cancer: A Qualitative Study Exploring Coping Strategies and Quality of Life.

This study aimed to examine coping strategies used by advanced colorectal cancer (CRC-A) survivors to manage death anxiety and fear of cancer progression, and links between these strategies and quality of life (QoL), distress, and death acceptance. Qualitative semi-structured interviews of 38 CRC-A survivors (22 female) were analysed via framework analysis. QoL and distress were assessed through the FACT-C and Distress Thermometer. Eleven themes were identified and mapped to active avoidance (keeping busy and distracted), passive avoidance (hoping for a cure), active confrontation (managing negative emotions; reaching out to others; focusing on the present; staying resilient), meaning-making (redefining one's identity; contributing to society; gaining perspective; remaining spiritual), and acceptance (accepting one's situation). Active confrontation (specifically utilising informal support networks) and meaning-making appeared beneficial coping strategies; more research is needed to develop and evaluate interventions which increase CRC-A survivors' use of these strategies to manage and cope with their death anxiety.

Work: saviour or struggle? A qualitative study examining employment and finances in colorectal cancer survivors living with advanced cancer.

PURPOSE: Continuing employment or returning to work (RTW) as a cancer survivor can be meaningful and financially necessary, yet challenging. However, there is a lack of qualitative research on RTW experiences and financial wellbeing of people with advanced colorectal cancer (CRC-A). This study aimed to fill this gap. METHODS: Adults treated for CRC-A were recruited 0.5-2 years post-surgery (or post-diagnosis of CRC-A for palliative chemotherapy participants). Semi-structured telephone interviews, exploring RTW and finances, were subjected to framework analysis. Demographic, clinical, and quality of life data (FACT-C, Distress Thermometer, COST measure) were collected to characterise the sample and inform the framework analysis. RESULTS: Analysis of 38 interviews revealed five overarching themes: work as a struggle, work as my identity, work as my saviour, work as a financial necessity, and employer and colleague response. Many survivors with CRC-A desired to, and had the capacity to, continue work or RTW, yet faced unique challenges from compounded stigma of both cancer and toileting issues. Inability to RTW negatively impacted financial and psychosocial wellbeing. Workplace support was an important facilitator of RTW. CONCLUSION: For survivors with CRC-A, continuing or RTW is fraught with challenges, including physical functioning challenges, financial anxiety, and unsupportive workplace environments. Survivors require psychosocial, financial, and employer support to manage these difficulties. This paper recommends a multiprong approach, including education programmes (facilitated through workers' union groups, human resource institutions, and/or large consumer CRC groups) and policies, to support workers and for employers to understand the unique challenges of employees with CRC-A.

The long haul: Lived experiences of survivors following different treatments for advanced colorectal cancer: A qualitative study.

PURPOSE: Modern treatments, including surgery and palliative chemotherapy without surgery, enable longer survival for people with advanced/recurrent colorectal cancer (CRC). Qualitative research comparing the physical and psychosocial outcomes of these different treatments is lacking. This study therefore aimed to explore and compare the physical and psychosocial challenges and survivorship experiences of people who receive different treatments for advanced CRC, through a qualitative study. METHOD: Adults with CRC who have undergone treatment for advanced/recurrent CRC were recruited 0.5-2 years post-surgery or, for palliative chemotherapy participants, 0.5-2 years post-diagnosis of advanced CRC. Qualitative semi-structured telephone interviews, analysed via framework analysis, explored quality of life (QoL) experiences. Demographic, clinical, and QoL data (Functional Assessment of Cancer Therapy - Colorectal (FACT-C), Distress Thermometer) were collected to characterise the sample and inform the framework analysis. RESULTS: A diverse sample of 38 participants (22 female) participated, with ages ranging 27-84 (Median = 59), FACT-C 56-132 (Median = 102), and distress 0-10 (median = 3). Analysis of interviews revealed three overarching themes: 1) the overwhelming impact of protracted, complex illness; 2) compounding and interacting effects of multiple treatments, impacts, and multimorbidity; and 3) the long haul is unpredictable, bumpy, and wearing. These themes reveal that people with advanced CRC experience many challenges due to the complex nature of the illness, its treatment, and side effects. CONCLUSIONS: Survivors require continued multi-disciplinary supportive care throughout follow-up to manage survivorship challenges. Guideline-led survivorship care and routine monitoring of physical and psychosocial wellbeing throughout follow up is imperative to manage patient expectations and support advanced CRC survivors.

Australian oncology health professionals' knowledge, perceptions, and clinical practice related to cancer-related cognitive impairment and utility of a factsheet.

PURPOSE: Cancer-related cognitive impairment (CRCI) can have debilitating effects on cancer survivors' quality of life. Despite this, patients often report a lack of information provided by health professionals (HPs) to assist with understanding and managing cognitive changes. This study aimed to explore Australian oncology HPs' understanding of and clinical practice related to CRCI including the use of a Cancer Council Australia CRCI factsheet. METHODS: Australian oncology HPs (medical oncologists, cancer nurses, and clinical psychologists) completed a questionnaire that assessed CRCI knowledge, prior to receiving the factsheet. Semi-structured interviews were conducted to explore their perceptions of CRCI and the factsheet. Interviews were recorded, transcribed, and analyzed using framework analysis to identify key themes. RESULTS: Questionnaires were completed by twenty-nine HPs. Most HPs had moderate to high knowledge of CRCI, yet low knowledge of the relationship between CRCI and cancer. Twenty-six (response rate 90%) HPs; medical oncologists (n = 7), cancer nurses (n = 12), and clinical psychologists (n = 7), consented to be interviewed. Three main themes were identified: (1) Is CRCI impact real or over-rated?; (2) If it is important, they will tell me: identifying and responding to CRCI in clinical practice; and (3) Using a factsheet in clinical practice. CONCLUSION: This study's multi-disciplinary exploration of Australian oncology HPs' perceptions of CRCI highlighted that health professional perceptions drive CRCI discussions with patients. Further education to support clinicians to discuss CRCI is required. Consideration of the barriers and facilitators within healthcare settings is important for successful integration of the factsheet into routine care.

Cancer-related cognitive impairment: a mixed methods evaluation of a standard factsheet.

PURPOSE: To understand the impact of cancer survivors accessing a standard factsheet regarding cancer-related cognitive impairment (CRCI), publicly available to the Australian public via Cancer Council Australia's websites. METHODS: Twenty-three cancer survivors completed a questionnaire assessing pre-factsheet knowledge of CRCI. Semi-structured interviews were conducted to explore participants' experiences of CRCI and perceptions of the factsheet. Interviews were analysed via thematic analysis using a framework approach. Finally, participants completed another questionnaire assessing post-factsheet change in knowledge of CRCI. RESULTS: Pre- and post-factsheet questionnaire change scores indicated increased knowledge and greater confidence about CRCI. Interview data resulted in five themes: generally positive perceptions of the factsheet's layout and wording; survivors, regardless of treatments received, experienced CRCI symptoms, with some having strong negative emotional responses to their symptoms; perceptions of the factsheet's strategies to manage CRCI ranged from relevant and useful, to impractical or unrealistic if symptoms were too severe; interactions with healthcare system influenced survivors' perceptions of help-seeking, with negative healthcare experiences a major barrier; and generally positive impacts of the factsheet, with survivors praising the factsheet's ability to validate the CRCI experience, increase CRCI knowledge, influence health beliefs, and prompt help-seeking. CONCLUSION: The factsheet presentation and wording were acceptable to participants. Its ability to normalise and raise awareness for CRCI validated participants' symptoms. The factsheet's potential as a first-line intervention in a stepped-care approach was identified, with participants finding the suggested self-management strategies practical. The factsheet may overcome barriers to self-reporting by encouraging patients to talk with HCPs about CRCI.

Colorectal cancer survivorship: A systematic review and thematic synthesis of qualitative research.

INTRODUCTION: With rapid changes in treatments for colorectal cancer (CRC), qualitative research into CRC survivorship requires greater synthesis. This paper aims to fill this gap through a systematic review (PROSPERO CRD42019131576) and thematic synthesis of the qualitative literature on survivorship experiences across early-stage and advanced CRC survivors. METHODS: CINAHL, Embase, MEDLINE, PsycINFO and PubMed were searched for qualitative CRC survivorship papers. Titles, abstracts and full texts were screened. Included articles (n = 81) underwent data extraction, CASP qualitative bias ratings and thematic synthesis. RESULTS: Bowel dysfunction caused functional limitations and negative quality of life (QoL), while stomas posed threats to body image and confidence. Physical symptoms hindered return to work, increasing financial burdens. Survivors' unmet needs included information regarding symptom expectations and management, and ongoing support throughout recovery. Advanced and early-stage survivors shared similar experiences. Advanced survivors struggled with fear of cancer recurrence/progression and feelings of powerlessness. Functional limitations, financial impacts and sexuality in advanced survivors were underexplored areas. CONCLUSION: CRC and its treatments impact survivors' QoL in all areas. A coordinated supportive care response is required to address survivors' unmet needs. Future qualitative studies should explore advanced CRC subpopulations, treatment-specific impacts on QoL and long-term (>5 years) impacts on CRC survivors.

Return to work after a cancer diagnosis: a meta-review of reviews and a meta-synthesis of recent qualitative studies.

PURPOSE: Returning to work (RTW) after cancer treatment can be challenging, but when desired, has many benefits. While there are many qualitative studies (reviews and recent studies) available on cancer survivors' experience of returning to work, synthesis of these qualitative studies is lacking. We aimed to summarise the existing qualitative reviews and recent studies following the last published review, to examine cancer survivors' motivations for and experiences of RTW, and to highlight factors within both the survivors and his or her environment that influence RTW. METHOD: A set of systematic reviews focusing on RTW were identified. A systematic search for individual papers published on RTW since the last review was also completed. Data extraction and bias assessment were conducted, with 25% double-coded to ensure reliability. A meta-ethnographic approach was utilised to synthesise the findings of each. RESULTS: Seven systematic reviews and 12 individual papers between 2017 and 2019 were identified. Quality was variable. Most reviews and studies focused on women with breast cancer. Three major themes were identified: person factors, employment factors and wider contextual factors including family, social and cultural variables. CONCLUSIONS: We identified gaps in research on the RTW experiences of people with cancers other than breast, men, those with low incomes and more diverse populations. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors need to consider personal, employer and wider contextual factors when deciding whether and when to RTW. Future interventions to support survivors should be informed by these findings, addressing the diverse range of potential factors related to RTW in an individual survivor.