Colorectal cancer survivors' experiences and views of shared and telehealth models of survivorship care: A qualitative study.

OBJECTIVES: The number of colorectal cancer (CRC) survivors is increasing and current models of survivorship care are unsustainable. There is a drive to implement alternative models of care including shared care between general practitioners (GPs) and hospital-based providers. The primary objective of this study was to explore perspectives on facilitators and barriers to shared care. The secondary objective was to explore experiences of telehealth-delivered care. METHOD: Qualitative data were collected via semi-structured interviews with participants in the Shared Care for Colorectal Cancer Survivors (SCORE) randomised controlled trial. Interviews explored patient experiences of usual and shared survivorship care during the SCORE trial. In response to the COVID pandemic, participant experiences of telehealth appointments were also explored. Interviews were recorded and transcribed for thematic analysis. RESULTS: Twenty survivors of CRC were interviewed with an even number in the shared and usual care arms; 14 (70%) were male. Facilitators to shared care included: good relationships with GPs; convenience of GPs; good communication between providers; desire to reduce public health system pressures. Barriers included: poor communication between clinicians; inaccessibility of GPs; beliefs about GP capacity; and a preference for follow-up care with the hospital after positive treatment experiences. Participants also commonly expressed a preference for telehealth-based follow-up when there was no need for a clinical examination. CONCLUSIONS: This is one of few studies that have explored patient experiences with shared and telehealth-based survivorship care. Findings can guide the implementation of these models, particularly around care coordination, communication, preparation, and personalised pathways of care.

Psychological health in Palliative Care: Thematic analysis of a psychiatrist's and an art therapist's clinical reflexive journals.

BACKGROUND: Patients receiving palliative care often face psychological distress, which can be challenging for clinicians to manage. Therefore, reflexive and visual journaling can be used as powerful techniques for clinician selfreflection and personal development. These journals are a form of practice wisdom, providing insights into psychological health in palliative care. AIM: This study aims to describe how patients receiving palliative care experience psychological health, explore the meaning of a palliative care clinician's work and contribute to the understanding of psychological health in palliative care through the reflexive and visual journals of clinicians. DESIGN: Using Gibb's reflective cycle as a framework for journaling, this study employs reflexive and visual journaling through the lenses of a psychiatrist and an art therapist. Journal data were analysed using a thematic analysis approach. SETTING/PARTICIPANTS: The two first authors journaled 107 clinical encounters and created 36 pieces of response art detailing encounters with patients and their families, and clinical conversations in two palliative care centres. RESULTS: Patient attributes and the clinical environment were observed to influence psychological health in palliative care. The patient's ability to navigate dying, maintain personhood, exert resilience and experience satisfying relationships contribute to psychological health. A clinical environment comprising clinicians with holistic competencies, systems promoting interdisciplinary collaborations and a values-based culture that promotes patient centricity strengthens the delivery of psychological care. CONCLUSIONS: Good psychological health in palliative care extends beyond psychopathology and is influenced by the cardinal elements of being human, value systems and systemic elements in the therapeutic environment.

A qualitative study of patients with Cancer of Unknown Primary: Perceptions of communication, understanding of diagnosis and genomic testing, and information needs.

OBJECTIVE: Patients with Cancer of Unknown Primary (CUP) commonly report poor understanding of their illness and high levels of psychological distress. Despite the potential benefits to CUP patients, there is a paucity of research exploring the reasons behind poor understanding of a CUP diagnosis. The aim of this study was to understand patients' experiences of communication with doctors, their understanding of diagnosis and the role of genomic testing, as well as their information needs. METHODS: Semi-structured interviews explored CUP patients' perceptions of communication with their doctors, understanding of their illness, and their needs regarding medical information. Qualitative inductive thematic analysis of transcribed audio-recordings was employed. SETTING/PARTICIPANTS: Nineteen patients were recruited from within a prospective cohort study involving routine genomic testing of CUP patients. RESULTS: CUP patients had varied perceptions of communication with doctors as well as different levels of need, readiness, and capacity for information. Some patients felt well understood and supported by their doctors while others did not. Many patients reported feeling overwhelmed and shocked when receiving their cancer diagnosis and emphasized the importance of family support in receiving and understanding medical information. While patients understood the implications of genomic testing for treatment and diagnosis, few had a detailed understanding of genomic testing. CONCLUSIONS: Patients' experience of communication and understanding of CUP could be potentially improved by clinicians' assessment of the communication style preferred by each patient and their family and the development of online resources to meet their evolving information needs.

"Take the tablet or don't take the tablet?"-A qualitative study of patients' experiences of self-administering anti-cancer medications related to adherence and managing side effects.

PURPOSE: Medication non-adherence is a well-recognised problem in cancer care, negatively impacting health outcomes and healthcare resources. Patient-related factors influencing medication adherence (MA) are complicated and interrelated. There is a need for qualitative research to better understand their underlying interaction processes and patients' needs to facilitate the development of effective patient-tailored complex interventions. This study aimed to explore experiences, perceptions, and needs relating to MA and side effect management of patients who are self-administering anti-cancer treatment. METHODS: Semi-structured audio-recorded interviews with patients who have haematological cancer were conducted. A comparative, iterative, and predominantly inductive thematic analysis approach was employed. RESULTS: Twenty-five patients from a specialist cancer hospital were interviewed. While self-administering cancer medications at home, patients' motivation to adhere was affected by cancer-related physical reactions, fears, cancer literacy and beliefs, and healthcare professional (HCP) and informal support. Patients desired need for regular follow-ups from respectful, encouraging, informative, responsive, and consistent HCPs as part of routine care. Motivated patients can develop high adherence and side effect self-management over time, especially when being supported by HCPs and informal networks. CONCLUSION: Patients with cancer need varied support to medically adhere to and manage side effects at home. HCPs should adapt their practices to meet the patients' expectations to further support them during treatment. We propose a multi-dimensional and technology- and theory-based intervention, which incorporates regular HCP consultations providing tailored education and support to facilitate and maintain patient MA and side effect self-management.

Strong emotional reactions for doctors working in palliative care: Causes, management and impact. A qualitative study.

OBJECTIVE: Doctors working in palliative care services are exposed to challenging emotional environments almost daily. Strong-emotional reactions experienced in this setting have implications for patient care and doctor wellbeing. Existing research has not focused on doctors working in specialist palliative care. This study aimed to understand what strong emotional reactions are experienced by doctors working in specialist palliative care, the cause of these strong emotional reactions and the impact they have on the lives of palliative care doctors. METHODS: Qualitative descriptive design included grounded theory techniques. Semi-structured, audio-recorded individual interviews explored doctors' memories of strong emotional reactions and challenging aspects in palliative care work, how emotions were managed and affected doctors' lives. SETTING/PARTICIPANTS: Twenty doctors were recruited from a specialist palliative care service within a public health network in Melbourne, Australia, comprising of two inpatient units, a consult service and outpatient clinic. RESULTS: Palliative care doctors experience a myriad of strong emotions in their line of work. Experiences found to elicit strong emotional reactions included patient, family and staff distress and organizational issues. Strong emotional reactions impacted clinical behaviours, patient care and doctors' personal lives. Strategies developed for managing strong emotional reactions included debrief, setting boundaries, avoidance and self-reflection, along with non-work strategies such as time with family. CONCLUSIONS: Whilst emotionally challenging experiences are unavoidable and necessary in a palliative care doctor's development, doctors need to be supported to avoid adversely impacting patient care or their own wellbeing.

Video decision support tool promoting values conversations in advanced care planning in cancer: protocol of a randomised controlled trial.

BACKGROUND: Views on advance care planning (ACP) has shifted from a focus solely on treatment decisions at the end-of-life and medically orientated advanced directives to encouraging conversations on personal values and life goals, patient-caregiver communication and decision making, and family preparation. This study will evaluate the potential utility of a video decision support tool (VDST) that models values-based ACP discussions between cancer patients and their nominated caregivers to enable patients and families to achieve shared-decisions when completing ACP's. METHODS: This open-label, parallel-arm, phase II randomised control trial will recruit cancer patient-caregiver dyads across a large health network. Previously used written vignettes will be converted to video vignettes using the recommended methodology. Participants will be ≥18 years and be able to complete questionnaires. Dyads will be randomised in a 1:1 ratio to a usual care (UC) or VDST group. The VDST group will watch a video of several patient-caregiver dyads communicating personal values across different cancer trajectory stages and will receive verbal and written ACP information. The UC group will receive verbal and written ACP information. Patient and caregiver data will be collected individually via an anonymous questionnaire developed for the study, pre and post the UC and VDST intervention. Our primary outcome will be ACP completion rates. Secondarily, we will compare patient-caregiver (i) attitudes towards ACP, (ii) congruence in communication, and (iii) preparation for decision-making. CONCLUSION: We need to continue to explore innovative ways to engage cancer patients in ACP. This study will be the first VDST study to attempt to integrate values-based conversations into an ACP intervention. This pilot study's findings will assist with further refinement of the VDST and planning for a future multisite study. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry No: ACTRN12620001035910 . Registered 12 October 2020. Retrospectively registered.

The cancer care observation: an empathy training experience.

OBJECTIVE: A 'cancer care observation' (CCO) empathy training is described. This study examined psychiatry trainees' experience of CCO and cancer patients' experience of being observed. METHOD: Trainees were paired with consenting patients undergoing cancer treatment; they observed a number of cancer treatment sessions and chronicled their experiences. The observations were discussed in supervision. Semi-structured interviews were conducted with trainees and observed patients. Observation journals and transcribed interviews were analysed using qualitative description. RESULTS: Seven trainees participated. Three themes emerged: patients used trainees to support themselves while trainees struggled with role identities; CCO extends trainees' professional awareness and can benefit patients; and staff reactions were mixed. Trainees developed wide-ranging, empathic insights into cancer and hospital care experiences. No patient regarded CCO as intrusive. CONCLUSIONS: Trainees garnered insights from CCO as they generated clinical hypotheses, learnt about professional boundaries and gained first-hand experience of unconscious mental processes based on their empathic connections. CCO lends itself to psychiatry and, potentially, other medical trainees.

How to verify patient identity and blood product compatibility using an electronic bedside transfusion system.

Transfusion of an incorrect blood component is an important avoidable serious hazard of transfusion resulting from process errors. Our group and others have taken advantage of new technology and developed electronic transfusion systems for safe transfusion practice in a previous studies. They allow the clinical staff to correctly identify the patient and the blood product at the bedside, ensuring the right blood product is given to the right patient. This video is to demonstrate the process and not to promote any specific product. It is a follow up our previous video clip on electronic remote blood issue in a previous study. The process for correct patient identification originates from the wristband, which contains the patient identification details in a 2D barcode and is printed from the electronic patient record system. These details are associated with the blood sample through using a portable printer to produce a label for the sample tube. The patient details are scanned into the blood bank laboratory information system (LIS) and are then printed on a compatibility label by the LIS, which also contains a 2-dimensional barcode, and is then attached to the blood product. Following an initial visual check of these details by the clinical staff, the electronic bedside system requires that both the patient wristband barcode and the blood product compatibility barcode are scanned. This will electronically verify at the patient's bedside that the right unit is to be given to the right patient. This is the final step in ensuring end-to-end electronic control and safe transfusion practice.

Characteristics of patients with cancer who die by suicide: Coronial case series in an Australian state.

OBJECTIVE: Suicide rates are elevated in epidemiological studies, but extrapolating population level data to the individual patient cancer is difficult, and there is a dearth of studies examining how suicidality might be linked to the cancer experience. We examine the cancer-suicide correlates to explore clinical implications and future research directions. METHOD: We used a novel database to examine all suicide deaths reported to the Coroners Court of Victoria between 2009 and 2013 in individuals with active, diagnosed cancer. Cases were classified in relation to whether cancer had been a probable, possible, or unlikely influence on suicidal ideation. Sociodemographic, clinical, health service contacts, and suicide method data were analysed to describe the characteristics of individuals with cancer at the time of their suicide. RESULTS: There were 2870 suicide deaths, and 118 cases met inclusion criteria. Clinically distinct patient subgroups emerged through a contrast between those cases where the data suggested a correlate between cancer and suicide, and those where the data did not. The former group had many more cancer-related health problems than the latter group, who had a higher burden of psychiatric illness that predated their cancer diagnosis. The intent to suicide was known to most clinicians. CONCLUSIONS: All clinicians working with cancer patients should be prepared to explore suicidal ideation. Understanding how the patient conceptualises suicidality with respect to cancer experience and mental health may be of central importance in determining whether mental health care is best provided as part of cancer care, or through a separate mental health service.

Timing of palliative care referral and aggressive cancer care toward the end-of-life in pancreatic cancer: a retrospective, single-center observational study.

BACKGROUND: Pancreatic cancer is noted for its late presentation at diagnosis, limited prognosis and physical and psychosocial symptom burden. This study examined associations between timing of palliative care referral (PCR) and aggressive cancer care received by pancreatic cancer patients in the last 30 days of life through a single health service. METHOD: A retrospective cohort analysis of end-of-life (EOL) care outcomes of patients with pancreatic cancer who died between 2012 and 2016. Key indicators of aggressive cancer care in the last 30 days of life used were: ≥1 emergency department (ED) presentations, acute inpatient/intensive care unit (ICU) admission, and chemotherapy use. We examined time from PCR to death and place of death. Early and late PCR were defined as > 90 and ≤ 90 days before death respectively. RESULTS: Out of the 278 eligible deaths, 187 (67.3%) were categorized as receiving a late PCR and 91 (32.7%) an early PCR. The median time between referral and death was 48 days. Compared to those receiving early PCR, those with late PCR had: 18.1% (95% CI 6.8-29.4%) more ED presentations; 12.5% (95% CI 1.7-24.8%) more acute hospital admissions; with no differences in ICU admissions. Pain and complications of cancer accounted for the majority of overall ED presentations. Of the 166 patients who received chemotherapy within 30 days of death, 23 (24.5%) had a late PCR and 12 (16.7%) an early PCR, with no association of PCR status either unadjusted or adjusted for age or gender. The majority of patients (55.8%) died at the inpatient palliative care unit. CONCLUSION: Our findings reaffirm the benefits of early PCR for pancreatic cancer patients to avoid inappropriate care toward the EOL. We suggest that in modern cancer care, there can sometimes be a need to reconsider the use of the term 'aggressive cancer care' at the EOL when the care is appropriately based on an individual patient's presenting physical and psychosocial needs. Pancreatic cancer patients warrant early PCR but the debate must thus continue as to how we best achieve and benchmark outcomes that are compatible with patient and family needs and healthcare priorities.

Does implementation matter if comprehension is lacking? A qualitative investigation into perceptions of advance care planning in people with cancer.

PURPOSE: While advance care planning holds promise, uptake is variable and it is unclear how well people engage with or comprehend advance care planning. The objective of this study was to explore how people with cancer comprehended advance care plans and examine how accurately advance care planning documentation represented patient wishes. METHODS: This study used a qualitative descriptive design. Data collection comprised interviews and an examination of participants' existing advance care planning documentation. Participants included those who had any diagnosis of cancer with an advance care plan recorded: Refusal of Treatment Certificate, Statement of Choices, and/or Enduring Power of Attorney (Medical Treatment) at one cancer treatment centre. RESULTS: Fourteen participants were involved in the study. Twelve participants were female (86%). The mean age was 77 (range: 61-91), and participants had completed their advance care planning documentation between 8 and 72 weeks prior to the interview (mean 33 weeks). Three themes were evident from the data: incomplete advance care planning understanding and confidence, limited congruence for attitude and documentation, advance care planning can enable peace of mind. Complete advance care planning understanding was unusual; most participants demonstrated partial comprehension of their own advance care plan, and some indicated very limited understanding. Participants' attitudes and their written document congruence were limited, but advance care planning was seen as helpful. CONCLUSIONS: This study highlighted advance care planning was not a completely accurate representation of patient wishes. There is opportunity to improve how patients comprehend their own advance care planning documentation.

Psychiatric sequelae of corticosteroid use in hematology in Australia: A qualitative study.

Despite widespread steroid usage for treating hematological conditions, minimal attention focuses on associated psychiatric side-effects. In the present study, we examined hematology patients' experiences of high-dose steroid treatment. This was undertaken by the use of a qualitative, descriptive design, which included convenience sampling and the inductive, cyclic, and constant comparative thematic analysis of interview transcripts. Eighteen patients participated, who were diagnosed with lymphoma, myeloma, leukemia, or idiopathic thrombocytopenia purpura. Four themes emerged: side-effects, misattribution of cause, self-management, and fragmented information. The study results revealed that hematology patients administered steroids can experience negligible to extensive erratic side-effects, with severe adverse repercussions. Psychological reactions to steroids are often misattributed. Patients mostly self-manage adverse effects experienced and receive only fragmented preparatory information, often not understanding steroid side-effects. Nurses could provide helpful "in the moment" education for inpatients who misunderstood steroid-related adverse effects, such as aggressive urges. Adverse repercussions for family were occasionally evident. Education, support, and ongoing care for patients experiencing adverse steroid side-effects are inadequate. Health professionals need to develop patient- and family-centered educational resources for potential, unpredictable, and usually adverse steroid side-effects.

Extending Awareness of Catholic Healthcare Ethics Among Junior Clinicians: A Qualitative Study.

As Catholic healthcare organizations form a substantive part of healthcare delivery in the USA and Australia, ethical standards for Catholic health care were developed to guide practice. This study examined junior staff's understanding of Catholic ethics. Using a qualitative descriptive design, we recruited 22 medical and nursing staff to interviews/focus groups. Though Catholic ethics seldom informed ethical approaches, the principles were acknowledged as being useful to support development of confident and respectful care approaches. Findings provide early insights into challenges faced in considering implementation of ethical codes across both secular and religious healthcare organizations, suggesting that a more creative and pastoral approach to dialoguing and implementing Catholic ethics is required.

Managing 'shades of grey': a focus group study exploring community-dwellers' views on advance care planning in older people.

BACKGROUND: Community-dwelling consumers of healthcare are increasing, many aging with life-limiting conditions and deteriorating cognition. However, few have had advance care planning discussions or completed documentation to ensure future care preferences are acted upon. This study examines the awareness, attitudes, and experiences of advance care planning amongst older people and unrelated offspring/caregivers of older people residing in the community. METHODS: Qualitative descriptive research, which included focus groups with older people (55+ years) and older people's offspring/caregivers living in an Australian city and surrounding rural region. Data was analysed using an inductive and comparative approach. Sampling was both convenience and purposive. Participants responded to web-based, newsletter or email invitations from an agency, which aims to support healthcare consumers, a dementia support group, or community health centres in areas with high proportions of culturally and linguistically diverse community-dwellers. RESULTS: Eight focus groups were attended by a homogenous sample of 15 older people and 27 offspring/caregivers, with 43% born overseas. The overarching theme, 'shades of grey': struggles in transition, reflects challenges faced by older people and their offspring/caregivers as older people often erratically transition from independence and capacity to dependence and/or incapacity. Offspring/caregivers regularly struggled with older people's fluctuating autonomy and dependency as older people endeavoured to remain at home, and with conceptualising "best times" to actualise advance care planning with substitute decision maker involvement. Advance care planning was supported and welcomed, x advance care planning literacy was evident. Difficulties planning for hypothetical health events and socio-cultural attitudes thwarting death-related discussions were emphasised. Occasional offspring/caregivers with previous substitute decision maker experience reported distress related to their decisions. CONCLUSIONS: Advance care planning programs traditionally assume participants are 'planning ready' to legally appoint a substitute decision maker (power of attorney) and record end-of-life treatment preferences in short time frames. This contrasts with how community dwelling older people and offspring/caregivers conceive future care decisions over time. Advance care planning programs need to include provision of information, which supports older people's advance care planning understanding and management, and also supports offspring/caregivers' development of strategies for broaching advance care planning with older people, and preparing for potential substitute decision maker roles. Development and integration of strategies to support older people's decision-making when in the 'grey zone', with fluctuating cognitive capacities, needs further consideration. Findings support an advance care planning model with conversations occurring at key points across a person's lifespan.

Religious leaders' perceptions of advance care planning: a secondary analysis of interviews with Buddhist, Christian, Hindu, Islamic, Jewish, Sikh and Bahá'í leaders.

BACKGROUND: International guidance for advance care planning (ACP) supports the integration of spiritual and religious aspects of care within the planning process. Religious leaders' perspectives could improve how ACP programs respect patients' faith backgrounds. This study aimed to examine: (i) how religious leaders understand and consider ACP and its implications, including (ii) how religion affects followers' approaches to end-of-life care and ACP, and (iii) their implications for healthcare. METHODS: Interview transcripts from a primary qualitative study conducted with religious leaders to inform an ACP website, ACPTalk, were used as data in this study. ACPTalk aims to assist health professionals conduct sensitive conversations with people from different religious backgrounds. A qualitative secondary analysis conducted on the interview transcripts focussed on religious leaders' statements related to this study's aims. Interview transcripts were thematically analysed using an inductive, comparative, and cyclical procedure informed by grounded theory. RESULTS: Thirty-five religious leaders (26 male; mean 58.6-years-old), from eight Christian and six non-Christian (Jewish, Buddhist, Islamic, Hindu, Sikh, Bahá'í) backgrounds were included. Three themes emerged which focussed on: religious leaders' ACP understanding and experiences; explanations for religious followers' approaches towards end-of-life care; and health professionals' need to enquire about how religion matters. Most leaders had some understanding of ACP and, once fully comprehended, most held ACP in positive regard. Religious followers' preferences for end-of-life care reflected family and geographical origins, cultural traditions, personal attitudes, and religiosity and faith interpretations. Implications for healthcare included the importance of avoiding generalisations and openness to individualised and/ or standardised religious expressions of one's religion. CONCLUSIONS: Knowledge of religious beliefs and values around death and dying could be useful in preparing health professionals for ACP with patients from different religions but equally important is avoidance of assumptions. Community-based initiatives, programs and faith settings are an avenue that could be used to increase awareness of ACP among religious followers' communities.

"I might not have cancer if you didn't mention it": a qualitative study on information needed by culturally diverse cancer survivors.

BACKGROUND: Immigrants from culturally and linguistically diverse (CALD) backgrounds diagnosed with cancer face multiple challenges with health systems foreign to them. There is scarce understanding about their needs following cancer treatment in the survivorship phase. Unmet needs were examined in immigrant Chinese and Greek cancer survivors in order to assist development of relevant and useful information resources for these CALD groups. METHODS: Qualitative descriptive design was used. Adult cancer survivors, whose native language was Mandarin, Cantonese or Greek, were recruited through ethnic cancer support groups and cancer specialists in two Australian cities. Six focus groups were conducted, two in each native language group. Recorded responses were transcribed, translated into English, and thematically analysed. RESULTS: Thirty-nine CALD cancer survivors participated from Greek (11), Cantonese (14) and Mandarin (14) backgrounds. Thematic findings included as follows: ongoing cancer-related stressors, cancer misunderstandings, coping strategies, 'survivor' seldom reflects self-appraisal, and additional CALD survivorship information needed. Immigrant cancer survivors may prefer 'recovery' to 'survivorship' descriptors and need information similar to Caucasian cancer survivors alongside as follows: resources for navigating health care, financial and community entitlements; caregiver-directed information to enhance their support; explanations about differences in health care approaches between survivors' original and adopted countries; and acknowledgment of survivorship diversity within CALD groups. CONCLUSIONS: Immigrant cancer survivors' additional requirements to native survivors likely reflect challenges in dealing with foreign environments and varied levels of acculturation within group members. Identification of immigrant cancer survivorship issues may support development of targeted resources for promoting survivors' self-care and capacity for finding, choosing, and using existing support options.

Introducing a model incorporating early integration of specialist palliative care: A qualitative research study of staff's perspectives.

BACKGROUND: Palliative care has evolved to encompass early integration, with evaluation of patient and organisational outcomes. However, little is known of staff's experiences and adaptations when change occurs within palliative care services. AIM: To explore staff experiences of a transition from a service predominantly focused on end-of-life care to a specialist service encompassing early integration. DESIGN: Qualitative research incorporating interviews, focus groups and anonymous semi-structured questionnaires. Data were analysed using a comparative approach. Service activity data were also aggregated. SETTING/PARTICIPANTS: A total of 32 medical, nursing, allied health and administrative staff serving a 22-bed palliative care unit and community palliative service, within a large health service. RESULTS: Patients cared for within the new model were significantly more likely to be discharged home (7.9% increase, p = 0.003) and less likely to die in the inpatient unit (10.4% decrease, p < 0.001). While early symptom management was considered valuable, nurses particularly found additional skill expectations challenging, and perceived patients' acute care needs as detracting from emotional and end-of-life care demands. Staff views varied on whether they regarded the new model's faster-paced work-life as consistent with fundamental palliative care principles. Less certainty about care goals, needing to prioritise care tasks, reduced shared support rituals and other losses could intensify stress, leading staff to develop personalised coping strategies. CONCLUSION: Services introducing and researching innovative models of palliative care need to ensure adequate preparation, maintenance of holistic care principles in faster work-paced contexts and assist staff dealing with demands associated with caring for patients at different stages of illness trajectories.

A mixed method feasibility study of a patient- and family-centred advance care planning intervention for cancer patients.

BACKGROUND: Advance care planning (ACP) is a process whereby values and goals are sensitively explored and documented to uphold patients' wishes should they become incompetent to make decisions in the future. Evidenced-based, effective approaches are needed. This study sought to assess the feasibility and acceptability of an ACP intervention informed by phase 1 findings and assessed the suitability of measures for a phase 3 trial. METHODS: Prospective, longitudinal, mixed methods study with convenience sampling. A skilled facilitator conducted an ACP intervention with stage III/IV cancer patients and invited caregivers. It incorporated the vignette technique and optional completion/integration of ACP documents into electronic medical records (EMR). Quantitative and qualitative data were collected concurrently, analysed separately, and the two sets of findings converged. RESULTS: Forty-seven percent consent rate with 30 patients and 26 caregivers completing the intervention. Ninety percent of patient participants had not or probably not written future care plans. Compliance with assessments was high and missing responses to items low. Small- to medium-sized changes were observed on a number of patients and caregiver completed measures, but confidence intervals were typically wide and most included zero. An increase in distress was reported; however, all believed the intervention should be made available. Eleven documents from nine patients were incorporated into EMR. ACP may not be furthered because of intervention inadequacies, busy lives, and reluctance to plan ahead. CONCLUSIONS: In this phase 2 study we demonstrated feasibility of recruitment and acceptability of the ACP intervention and most outcome measures. However, patient/family preferences about when and whether to document ACP components need to be respected. Thus flexibility to accommodate variability in intervention delivery, tailored to individual patient/family preferences, may be required for phase 3 research.

'What is this active surveillance thing?' Men's and partners' reactions to treatment decision making for prostate cancer when active surveillance is the recommended treatment option.

OBJECTIVE: In the past decade, localised prostate cancer (LPC) management has been shifting from three radical treatment options (radical prostatectomy, external beam radiotherapy, or brachytherapy) to also include active surveillance (AS). This study examines men with LPC and partners' experiences of choosing between AS and radical treatments, and their experiences of AS when selected. METHODS: A qualitative descriptive research design was used. Interviewed participants were men, and partners of men, who either had chosen radical treatment immediately following diagnosis or had been on AS for at least 3 months. AS was the recommended treatment. Transcribed interviews were thematically analysed and inter-rater reliability integrated. RESULTS: Twenty-one men and 14 partners participated. Treatment decisions reflected varied reactions to prostate cancer information, regularly described as contradictory, confusing, and stressful. Men and partners commonly misunderstood AS but could describe monitoring procedures. Partners often held the perception that they were also on AS. Men and partners usually coped with AS but were sometimes encumbered by treatment decision-making memories, painful biopsies, ongoing conflicting information, and unanswered medical questions. Radical treatment was selected when cancer progression was feared or medically indicated. Some preferred doctors to select treatments. CONCLUSIONS: To reduce distress frequently experienced by men diagnosed with LPC and their partners during treatment decision making and ongoing AS monitoring, the following are needed: improved community and medical awareness of AS; consistent information about when radical treatment is required; and consistent, unbiased information on treatment options, prognostic indicators, and side effects. Regularly updated decisional support information/aids incorporating men's values are imperative.

"A quiet still voice that just touches": music's relevance for adults living with life-threatening cancer diagnoses.

PURPOSE: Music has historically aided health and loss-adaptation, however, cancer patients' experience of music for self-care is not well understood. This study examines adult cancer patients' views about music's role before and after diagnosis. METHODS: Constructivist approach, with grounded theory informed design using convenience, snowball and theoretical sampling. Patients from Australian metropolitan cancer and hospice settings completed demographic questionnaires and participated in semi-structured interviews. Qualitative inter-rater reliability was applied. RESULTS: Fifty-two patients reported comparable time spent experiencing music pre-post diagnosis. Music may remain incidental; however, many patients adapt music usage to ameliorate cancer's aversive effects. Patients often draw from their musical lives and explore unfamiliar music to: remain connected with pre-illness identities; strengthen capacity for enduring treatment, ongoing survival (even when knowing "you're going to die"), or facing death; reframe upended worlds; and live enriched lives. Patients can ascribe human or physical properties to music when describing its transformative effects. Familiar lyrics maybe reinterpreted, and patients' intensified emotional reactions to music can reflect their threatened mortality. Sometimes music becomes inaccessible, elusive, and/or intensifies distress and is avoided. Families', friends' and professionals' recognition of patients' altered musical lives and music-based suggestions can extend patients' use of music for self-care. CONCLUSION: Health professionals can support patients by inquiring about their music behaviours and recognising that altered music usage may signify vulnerability. Although commonly recommended, hospital concerts and music broadcasts need sensitive delivery. Patients' preferred music should be available in diagnostic, treatment and palliative settings because it can promote endurance and life enrichment.