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.

Evaluation of a novel individualised communication-skills training intervention to improve doctors' confidence and skills in end-of-life communication.

BACKGROUND: We developed a novel individualised training program regarding end-of-life communication, designed to be time effective for busy junior-doctors working in hospital settings. AIM: We aimed to pilot this brief individualised training program with junior-doctors to explore its acceptability, feasibility and effect on the doctors' confidence, communication skills, attitudes towards psychosocial care and burnout. DESIGN: The content of the training intervention was informed by a systematic literature review and evidence-based clinical practice guidelines regarding end-of-life communication. The intervention was based on sound educational principles and involved three one-hour teaching sessions over a three-week period, including two individual sessions with an expert facilitator and simulated patient/caregiver. In addition, participants received written and audiovisual take-home learning materials. PARTICIPANTS were videotaped consulting with a simulated patient/caregiver pre/post training to assess the impact of the course on their communication behaviours. PARTICIPANTS completed de-identified questionnaires pre/post training, including self-assessed confidence, attitudes to psychosocial care, and the Maslach Burnout inventory. PARTICIPANTS: PARTICIPANTS included 22 junior-doctors from a large teaching hospital in Sydney, Australia. RESULTS: All participants reported that the training was useful, had been helpful for their communication with patients and that they would recommend the training to others. Significant improvements were found in participants' communication skills (in seven out of 21 specific and all three global communication behaviours assessed, range P=0.02 to <0.001), confidence in communicating about relevant topics (P<0.001), attitudes towards psychosocial care (P=0.03) and sense of personal accomplishment (P=0.043). There were no overall differences in participants' burnout levels. CONCLUSION: This intervention shows promise and warrants further formal evaluation.

Intensive communication skills teaching for specialist training in palliative medicine: development and evaluation of an experiential workshop.

BACKGROUND: The Australasian Chapter of the Palliative Medicine (AChPM) Curriculum Development Group identified communication as a core skill that trainees in palliative medicine need to acquire, and proposed the development of a communication skills workshop that should become a compulsory part of training to achieve accreditation as a palliative medicine specialist in Australia and New Zealand. This paper describes the development and subsequent evaluation of this module. METHODS: A three-day communication workshop was developed in collaboration with expert communication skills facilitators from the United States and Australia. The teaching consists of: (1) brief plenary presentations providing an evidence-based framework for communication and a demonstration of suggested strategies; (2) small group experiential learning providing opportunities to practice communication skills with clinically relevant simulated patients, self-appraisal, constructive feedback, and reflective exercises; and (3) accompanying course-specific written material. Participants completed de-identified questionnaires before, after, and three months following completion of the workshop. RESULTS: Forty-one participants completed the training in two workshops held in 2008 and 2009. Participants said in their questionnaire responses that the training was useful, would be helpful for their communication with patients, and that they would recommend the training to others. Qualitative feedback was highly positive. Self-assessed confidence in communication skills significantly increased following the workshop (p<.001) and was sustained at three months (p<.001). CONCLUSION: The training is highly valued by participants and increases confidence in communication skills. Facilitator training and capacity planning will be critical for the ongoing success of the communication workshop.