Carer preparedness improved by providing a supportive educational intervention for carers of patients with high-grade glioma: RCT results.

BACKGROUND: High-grade glioma (HGG) is a rapidly progressing and debilitating disease. Family carers take on multiple responsibilities and experience high levels of distress. We aimed to deliver a nurse-led intervention (Care-IS) to carers to improve their preparedness to care and reduce distress. METHODS: We conducted a randomised controlled trial (ACTRN:12612001147875). Carers of HGG patients were recruited during patients' combined chemoradiation treatment. The complex intervention comprised four components: (1) initial telephone assessment of carer unmet needs; (2) tailored hard-copy resource folder; (3) home visit; and, (4) monthly telephone support for up to 12 months. Primary outcomes included preparedness for caregiving and distress at 2, 4, 6 and 12 months. Intervention effects were estimated using linear mixed models which included a time by group interaction. Secondary outcomes included anxiety, depression, quality of life, carer competence and strain. RESULTS: We randomised 188 carers (n = 98 intervention, n = 90 control). The intervention group reported significantly higher preparedness for caregiving at 4 months (model ß = 2.85, 95% CI 0.76-4.93) and all follow-up timepoints including 12 months (model ß = 4.35, 95% CI 2.08-6.62), compared to the control group. However, there was no difference between groups in carer distress or any secondary outcomes. CONCLUSIONS: This intervention was effective in improving carer preparedness. However, carer distress was not reduced, potentially due to the debilitating/progressive nature of HGG and ongoing caring responsibilities. Future research must explore whether carer interventions can improve carer adjustment, self-efficacy and coping and how we support carers after bereavement. Additionally, research is needed to determine how to implement carer support into practice.

Bereavement outcomes of carers of patients with high grade glioma: Experiences of support before and after the death.

Carers of people with High Grade Glioma (HGG) completed a survey assessing their anxiety, depression, and grief in addition to open-ended questions exploring their experiences of support pre- and post-death (N = 25). One-third reported borderline or clinical levels of anxiety, depression, and grief related distress. Given the poor prognosis and rapid deterioration of patients with HGG, the findings highlight the importance of sensitive communication about prognosis early in the disease trajectory, information tailored to disease stage, the initiation of a referral to psychological support services, and timely discussions about the preferred place of care and death.

Developing a practice-based research agenda for grief and bereavement care.

We aimed to identify practitioners' perspectives on current research priorities in grief and bereavement care. Grief and bereavement care providers were invited to participate in a three-phase Delphi study to create expert consensus on the top priorities for grief and bereavement research. A total of 140 participants completed Phase 1, 84 completed Phase 2, and 70 completed Phase 3. These top 10 research priorities form the basis of a practice-based research agenda for grief and bereavement care to enable researchers to respond to key issues in grief and bereavement care that will ultimately improve the lives of bereaved people.

Culturally and linguistically diverse palliative care patients' journeys at the end-of-life.

OBJECTIVE: To understand the clinical and psychosocial journey of culturally and linguistically diverse (CALD) palliative care patients. METHOD: This study was conducted at a subacute hospital with a specialist palliative care unit and a community palliative care service in a metropolitan region of New South Wales, Australia. Medical records of 100 deceased patients from CALD backgrounds over a 12-month period from 2014 to 2015 were recorded on a data mining tool. The cohort had transitioned to either community or inpatient palliative care services with a life-limiting illness. We used descriptive statistical analyses to identify the patients' end-of-life journeys in the physical, psychological, spiritual, and social palliative care domains. Staff case notes were used to enrich the quantitative data. RESULT: The most common symptoms burdening the patients were decreased mobility (82%), pain (76%), and poor appetite (60%). The majority of patients (87%) were diagnosed with cancer. Language was a major barrier to the assessment and management of symptoms. The vast majority of patients were born in Europe and Asia. Twenty-nine percent of the patients preferred to use English. However, among patients who required an interpreter on admission, only 9% used professional interpreters. Family distress around patients' lack of food consumption was prominent, along with provider concern when this led to families "force feeding" patients. Only 5% of files documented patients', and 21% of files documented families', cultural wishes or needs. Care of the body after death was only documented in 20% of files. SIGNIFICANCE OF RESULTS: The increasing cohort of older people from CALD backgrounds will have significant implications for the planning and delivery of palliative care services. There is an emerging need to address the physical, psychological, spiritual, and social palliative care domains in the end-of-life journeys of patients from CALD backgrounds to ensure the provision of quality care.

'Death is difficult in any language': A qualitative study of palliative care professionals' experiences when providing end-of-life care to patients from culturally and linguistically diverse backgrounds.

BACKGROUND: Ethnic minority patients have unique challenges in accessing health services. These include language difficulties, unfamiliarity with the health system, lower rates of cancer screening and survival, higher rates of reported side effects from cancer treatment and poorer quality of life. Little is known about this patient group when transitioning to palliative care. AIM: To elicit the experiences of palliative care health professionals when providing care for patients from culturally and linguistically diverse backgrounds which differ from mainstream Australian language and culture. DESIGN: An emergent qualitative design, informed by theoretical and procedural direction from grounded theory research. SETTING/PARTICIPANTS: Four focus groups held with palliative care staff ( n = 28) in a single specialist palliative care service in Australia. RESULTS: The following themes emerged: (1) determining the rules of engagement around discussion of diagnosis and prognosis, (2) navigating the challenge of language to patient understanding, (3) understanding migration experiences to establish trust, (4) maintaining the balance between patient safety and comfort care, (5) providing a good death experience through accommodation of beliefs, and (6) navigating the important role of family members while privileging patient preferences. CONCLUSION: Underlying provider perceptions of caring for patients was that death is difficult in any language. Care was conceptualised as considering cultural and linguistic backgrounds within individualistic care. Understanding the migration experience and building trust were key elements of this individualised approach. Acknowledgement of the key role played by families in patient care and safety are strategies to minimise barriers and understand the concerns of this patient group.

Feasibility Testing and Refinement of a Supportive Educational Intervention for Carers of Patients with High-Grade Glioma - a Pilot Study.

The aim of this pilot study was to test the feasibility and acceptability of a family carer intervention for carers of patients with high-grade glioma (HGG). The intervention consisted of: (1) an initial telephone assessment of carer needs; (2) a personalised tabbed resource file; (3) nurse-led home visit; and (4) ongoing telephone support. Two consumer representatives reviewed the intervention resources. The intervention was then piloted with participants who were the primary carer for patients undergoing treatment for HGG in Western Australia. Two consumers provided feedback on the resource, and 10 carers participated in the pilot. Positive feedback was received about the resource manual and intervention. Suggestions were also made for changes which were implemented into the trial. The surveys were shortened based on feedback. Participants identified a large range of issues during nursing assessments which would not otherwise be identified or addressed for carers receiving routine care. As a result of providing the intervention, the nurse was able to make referrals to address needs that were identified. This pilot study enabled us to refine and test the Care-IS intervention and test the feasibility and acceptability of proposed survey instruments. We were also able to estimate recruitment and retention and the overall study timeline required for the randomised controlled trial we are now conducting. It has also demonstrated the role of the nurse who delivered the intervention and allowed us to refine communication and referral pathways.

Distress and psychological morbidity do not reduce over time in carers of patients with high-grade glioma.

PURPOSE: This study aimed to determine how carer distress and psychological morbidity change over time following a patient's diagnosis of high-grade glioma (HGG) and identify factors associated with changes in carers' psychological status. METHODS: Carers of patients with HGG planned for chemoradiotherapy were recruited to this longitudinal cohort study. Carers completed questionnaires during patients' chemoradiotherapy and 3 and 6 months later including the following: the Distress Thermometer (DT); General Health Questionnaire-12 (GHQ-12); and three single-item questions about understanding of information presented by health professionals, confidence to care and preparedness to care for their relative/friend. Linear latent growth models were applied. RESULTS: The time 1 questionnaire was completed by 118 carers, of these 70 carers provided responses to the third time point. Carer distress and psychological morbidity were most prominent proximal to diagnosis, but remained high over time. Sixty-two percent of participants had moderate or high distress on the DT at time 1, 61% at time 2 and 58% at time 3. Scores on the DT and the GHQ-12 correlated significantly at all time points as did changes in scores over time (p < .001). However, for individual carers, the DT or GHQ-12 scores at one time point did not strongly predict scores at subsequent time points. CONCLUSION: In carers of patients with HGG, distress levels are consistently high and cannot be predicted at any time point. Carers should be monitored over time to identify evolving psychological morbidity. The single-item DT correlates highly with GHQ-12 scores and is a suitable tool for rapid repeated screening.

What is the evidence for conducting palliative care family meetings? A systematic review.

BACKGROUND: Structured family meeting procedures and guidelines suggest that these forums enhance family-patient-team communication in the palliative care inpatient setting. However, the vulnerability of palliative patients and the resources required to implement family meetings in accordance with recommended guidelines make better understanding about the effectiveness of this type of intervention an important priority. Aim and design: This systematic review examines the evidence supporting family meetings as a strategy to address the needs of palliative patients and their families. The review conforms to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. DATA SOURCES: Six medical and psychosocial databases and "CareSearch," a palliative care-specific database, were used to identify studies reporting empirical data, published in English in peer-reviewed journals from 1980 to March 2015. Book chapters, expert opinion, and gray literature were excluded. The Cochrane Collaboration Tool assessed risk of bias. RESULTS: Of the 5051 articles identified, 13 met the inclusion criteria: 10 quantitative and 3 qualitative studies. There was low-level evidence to support family meetings. Only two quantitative pre- and post-studies used a validated palliative care family outcome measure with both studies reporting significant results post-family meetings. Four other quantitative studies reported significant results using non-validated measures. CONCLUSION: Despite the existence of consensus-based family meeting guidelines, there is a paucity of evidence to support family meetings in the inpatient palliative care setting. Further research using more robust designs, validated outcome measures, and an economic analysis are required to build the family meeting evidence before they are routinely adopted into clinical practice.

The presence and predictors of complicated grief symptoms in perinatally bereaved mothers from a bereavement support organization.

The present study investigated the presence and possible predictors of complicated grief symptoms in perinatally bereaved mothers (N = 121) up to 5 years postbereavement. The presence of complicated grief scores in the clinical range was 12.4%, which is higher than in many other bereaved populations, and the presence of other living children may protect against the development of complicated grief symptoms. The majority of the women were able to negotiate a perinatal loss without developing complicated grief; however, there remains an important group of women who up to 5 years later score in the clinical range for complicated grief symptoms.

Sleep disturbances in caregivers of patients with advanced cancer: A systematic review.

OBJECTIVE: Sleep disturbances are a common issue for those who provide informal care to someone with a life-limiting condition. The negative consequences of poor sleep are well documented. The purpose of the present study was to determine the sleep patterns of caregivers of patients with advanced cancer. METHOD: An extensive systematic review of studies reporting empirical sleep data was undertaken in 2015 in accordance with the PRISMA Statement. A total of eight electronic databases were searched, with no date restrictions imposed. Additionally, a search of the bibliographies of the studies identified during the electronic search was conducted. Search terms included: "sleep," "insomnia," "sleep disturbance," "circadian rhythm," "caregiver," "carer," "advanced cancer," "palliative cancer," and MESH suggestions. The inclusion criteria required studies to be in English and to report primary qualitative and/or quantitative research that examined sleep in caregivers of patients with advanced cancer. Unpublished studies, conference papers, and dissertations were excluded. RESULTS: Overall, 10 studies met the inclusion criteria and were included in the review. Two major findings emerged from the data synthesis. First, at least 72% of caregivers reported moderate to severe sleep disturbance as measured by the Pittsburgh Sleep Quality Index. Second, objective measurement of caregivers' sleep identified that some caregivers experienced up to a 44% reduction in their total sleep time compared to the recommended eight hours. SIGNIFICANCE OF RESULTS: Reduction in total sleep time appears to be the biggest issue facing caregivers' sleep. Future studies need to explore the specific factors that cause these sleep disturbances and thus help to identify interventions to optimize sleep.

A preliminary study to develop an intervention to facilitate communication between couples in advanced cancer.

OBJECTIVE: Psychosocial interventions directed to couples where one has advanced cancer can reduce distress, enhance communication, and provide an opportunity for relational growth. The present study aimed to develop an intervention to facilitate communication about living with advanced cancer using the Patient Dignity Inventory (PDI) as the focus of a clinical interview with couples toward the end of life. METHOD: Couples were recruited from oncology and palliative care services at a Sydney hospital. After the PDI was developed and manualized as an intervention for couples, the PDI-Couple Interview (PDI-CI) was delivered by a clinical psychologist and comprised the following: (1) the patient completed the PDI; (2) the patient's identified partner completed the PDI about how they thought the patient was feeling; and (3) the clinician reviewed the results with the couple, summarizing areas of concurrence and discordance and facilitating discussion. RESULTS: Some 34 couples were referred, of which 12 consented, 9 of whom completed the clinical interview. Reported benefits included enabling couples to express their concerns together, identifying differences in understanding, and giving "permission to speak" with each other. The focus of the interview around the PDI provided a structure that was particularly acceptable for men. Most couples confirmed that they were "on the same page," and where differences were identified, it provided a forum for discussion and a mutual understanding of the challenges in managing advanced cancer within a supportive context. SIGNIFICANCE OF RESULTS: Participant couples' experiences of the PDI-CI provide valuable insight into the benefits of this intervention. This preliminary study indicates that the intervention is a relatively simple means of enhancing closer communication and connection between couples where one has advanced cancer and may be an important adjunct in helping prepare couples for the challenges inherent toward the end of life. Further investigation of feasibility with a larger sample is recommended.

'Workshops in healing' for senior medical students: a 5-year overview and appraisal.

We report upon the design, content and feedback from an interactive, experiential series of Workshops in Healing for senior medical students. Fifty-six final year medical students enrolled in 2×3 h workshops designed around the core themes of 'physician know thyself' (Workshop 1) and 'confronting suffering' (Workshop 2). Of the 56 students who initially enrolled, 48 students completed both workshops and provided a written open-ended reflection of their learning experience. The study, undertaken over a consecutive 5-year period (2008-2012), employed an emergent, qualitative design using thematic analysis of the reflective comments. We found that the design and content of both workshops promoted transformative learning for these final year medical students. Students identified the following benefits: (1) the opportunity to reaffirm their commitment to their chosen career path; (2) the value of listening to other students share their stories; (3) the importance of the timing of the workshops to occur after exams; (4) the use of various mediums such as art, poetry, music and contemporary/classic literature to present concepts of suffering and healing; and (5) the creation of a safe and confidential space. Students reported that these innovative workshops gave them a renewed sense of drive and enthusiasm for their chosen career. They highlighted the importance of addressing an aspect of medicine (healing) not covered in the traditional medical curriculum. Workshops in Healing helped them to rediscover a deeper meaning to medicine and their roles as future healthcare professionals.

Support needs of Australians bereaved during the COVID-19 pandemic: A cross-sectional survey study.

BACKGROUND: COVID-19 disrupted access to bereavement support. The objective of this study was to identify the bereavement supports used by Australians during the COVID-19 pandemic, perceived helpfulness of supports used, prevalence and areas of unmet support need, and characteristics of those with unmet support needs. METHODS: A convenience sample of bereaved adults completed an online questionnaire (April 2021-April 2022) about their bereavement experiences including support use and perceived helpfulness, unmet support needs and mental health. Multiple logistic regression was conducted to determine sociodemographic correlates of unmet needs. Open-ended responses were examined using content analysis to determine key themes. RESULTS: 1,878 bereaved Australians completed the questionnaire. Participants were mostly women (94.9%) living in major cities (68%) and reported the death of a parent (45%), with an average age of 55.1 years (SD = 12.2). The five most used supports were family and friends, self-help resources, general practitioners, psychologists, and internet/online community groups. Notably, each was nominated as most helpful and most unhelpful by participants. Two-thirds (66%) reported specific unmet support needs. Those with unmet needs scored lower on mental health measures. Correlates of unmet needs included being of younger age, being a spouse or parent to the deceased; reporting more impacts from public health measures, and not reporting family and friends as supports. The most frequent unmet need was for social support after the death and during lockdown. CONCLUSIONS: This study demonstrates the complexity of bereavement support needs during a pandemic. Specialised grief therapy needs to be more readily available to the minority of grievers who would benefit from it. A clear recommendation for a bereavement support action plan is to bolster the ability of social networks to provide support in times of loss. The fostering of social support in the wake of bereavement is a major gap that needs to be addressed in practice, policy, and research.

Signs of post-traumatic stress disorder in caregivers following an expected death: a qualitative study.

BACKGROUND: Complications of grief are an important area of investigation with potential to improve the well-being of palliative care caregivers. There has been little study of the prevalence or significance of post-traumatic stress disorder for those bereaved after an expected death. AIM: To identify evidence suggestive of post-traumatic stress disorder symptoms in a population of bereaved caregivers of patients who have died of ovarian cancer. DESIGN: Caregivers' recollections of their end-of-life experiences were coded and analysed, using qualitative data obtained from interviews 6 months after the patient's death. SETTING/PARTICIPANTS: Australian Ovarian Cancer Study-Quality of Life Study is a population-based epidemiological study using mixed methods to explore caregivers' experiences following the expected death of a woman with ovarian cancer. Thirty-two caregivers from the Australian Ovarian Cancer Study-Quality of Life Study participated in semi-structured telephone interviews 6 months post-bereavement. RESULTS: When describing the patient's death at their 6-month interview, all interviewees used language consistent with some degree of shock and traumatisation. For the majority, there was also evidence suggesting resilience and resolution. However, a number of interviewees describe intrusive memories associated with physical sights and sounds that they witnessed at the deathbed. CONCLUSIONS: This exploratory study demonstrates the phenomenon of the 'shocked caregiver'. If trauma symptoms are present in bereaved carers in palliative care, it has implications for palliative care provision. Given that trauma symptoms may be distinct from prolonged grief disorder, this may also have implications for provision of bereavement counselling. Further research into this phenomenon is required.

Are videoconferenced consultations as effective as face-to-face consultations for hereditary breast and ovarian cancer genetic counseling?

PURPOSE: Videoconferencing is increasingly used to deliver family cancer services for hereditary breast and ovarian cancer to outreach areas. This study compared the effectiveness and acceptability of genetic counseling for hereditary breast and ovarian cancer through videoconferencing (hereafter referred to as "telegenetics"). METHODS: One hundred six women seen by telegenetics and 89 women seen face-to-face completed self-administered questionnaires before, and 1 month after, genetic counseling. Telegenetics consultations involved a genetic clinician via telegenetics in addition to a local genetic counselor present with the patient. RESULTS: No significant differences were found between telegenetics and face-to-face genetic counseling in terms of knowledge gained (P = 0.55), satisfaction with the genetic counseling service (P = 0.76), cancer-specific anxiety (P = 0.13), generalized anxiety (P = 0.42), depression (P = 0.96), perceived empathy of the genetic clinician (P = 0.13), and perceived empathy of the genetic counselor (P = 0.12). Telegenetics performed significantly better than face-to-face counseling in meeting patients' expectations (P = 0.009) and promoting perceived personal control (P = 0.031). CONCLUSION: Telegenetics seems to be an acceptable and effective method of delivering genetic counseling services for hereditary breast and ovarian cancer to underserved areas.

Development and pilot testing of a communication aid to assist clinicians to communicate with women diagnosed with ductal carcinoma in situ (DCIS).

PURPOSE: The literature highlights the confusion amongst women diagnosed with ductal carcinoma in situ (DCIS) about aspects of their disease and treatment and the wide variation in how doctors communicate about DCIS. The DCIS communication aid (CA) was developed to assist clinicians to communicate with women diagnosed with DCIS and to improve women's understanding about their disease, prognosis and treatment options. This study aimed to assess patient and clinician perceptions of the CA. METHODS: The CA included information and diagrams about key aspects of the diagnosis, prognosis, treatment and support. It was designed to be used in clinical consultations and taken home after the consultation. Australian women with DCIS (n = 18) participated in structured interviews and clinicians (n = 7), including surgeons and radiation oncologists, completed surveys to assess their perceptions of the CA. Main outcome measures included satisfaction with the content, design and diagrams in the CA, and perceptions of the benefits of the CA and its impact on doctor-patient communication. RESULTS: All clinicians and women with DCIS reported that the CA would assist communication and help women understand their diagnosis. CONCLUSIONS: This is the first intervention designed to decrease the confusion amongst women with DCIS and improve doctor-patient communication in this area. This study highlights that interventions such as the DCIS communication aid may be a valuable resource for clinicians and women with DCIS. This study also highlights key communication challenges relating to DCIS.

Patients Receiving Palliative Care and Their Families' Experiences of Participating in a "Patient-Centered Family Meeting": A Qualitative Substudy of the Valuing Opinions, Individual Communication, and Experience Feasibility Trial.

Background: Family meetings are used in palliative care to facilitate discussion between palliative patients, their families, and the clinical team. However, few studies have undertaken qualitative assessment of the impact of family meetings on patients and their families. Objectives: To explore inpatients receiving palliative care and their families' experiences of participation in a patient-centered family meeting ("Meeting"), where the patient sets the Meeting agenda. Design: This qualitative study used the constant comparative method for thematic content analysis of the data. Setting/Participants: The setting was a specialist palliative care (SPC) inpatient unit in Australia. Nine palliative care inpatients and nine family members were interviewed. Measurements: Semistructured interviews were used evaluate the patients' and their families' experiences and perceptions of the Meeting. Results: Three overarching themes described the experiences of participating in a patient-focused family meeting, namely that the Meeting: (1) provides a forum for inpatients receiving SPC to speak openly about their end-of-life concerns, clarify issues, and is of comfort to patients; (2) provides the family members with a voice, and an opportunity to discuss their concerns and have their needs addressed; and (3) helps to ensure that everyone is "on the same page" and patient care plans can be discussed. Conclusions: These Meetings are a potentially effective means of supporting certain palliative care patients and their families to articulate, confront, and address end-of-life issues in the presence of the interdisciplinary team. It is important to undertake further research to further examine the evidence for this Meeting model and to identify the patients and families who would most benefit from this type of Meeting.

The Development of the Australian National Palliative Care Clinical Studies Collaborative "Integrating Qualitative Research into Clinical Trials Framework".

Qualitative methodologies have multiple contributions to health research, including improving baseline understanding in new areas of enquiry; questioning existing assumptions; understanding viewpoints of specific subgroups; and offering complex, contextual information. While the role of qualitative research within mixed methods approaches is well documented, the contribution to clinical trial design and conduct is less well recognized. The Australian Palliative Care Clinical Studies Collaborative and Cancer Symptom Trials have developed a framework to detail how qualitative research might contribute to each key aspect of clinical trials. This practical framework provides real-world examples, including sample qualitative questions, to consider at each phase of controlled clinical trial development. As the number of randomized clinical trials in palliative care increases, a readily accessible approach to integrating qualitative research into clinical trial design and conduct is needed so that its full potential for improving study recruitment, conduct, outcomes, interpretation, and implementation may be realized.

Women's experience of telehealth cancer genetic counseling.

Telegenetics offers an alternative model of delivering genetic counseling to rural and outreach areas; however there is a dearth of qualitative research into the patient's experience. Twelve women who had received telemedicine genetic counseling for hereditary breast and/or ovarian cancer (HBOC) within the previous 12 months participated in a semi-structured telephone interview. The interview explored women's experience with telegenetics, satisfaction, perceived advantages and disadvantages and quality of the interaction with their genetic professionals. Overall women were highly satisfied with telegenetics. Telegenetics offered them convenience and reduced travel and associated costs. The majority of women described feeling a high degree of social presence, or rapport, with the off-site genetic clinician. One woman with a recent cancer diagnosis, reported that telemedicine was unable to meet her needs for psychosocial support. This finding highlights the need to be mindful of the psychosocial support needs of women with a recent diagnosis being seen via telegenetics. Patients attending for HBOC genetic counseling are generally highly satisfied with the technology and the interaction. Care should be taken, however, with patients with more complex psychosocial needs.

"Standing Shoulder to Shoulder to Tell the Family What Was Really Going On": A Qualitative Study Exploring Palliative Care Clinicians' Perceptions of "Patient-Centered Family Meetings".

Background: Family meetings are often conducted in palliative care, but there is no universal agreed or accepted model. A new model of Patient-Centered Family Meetings is proposed whereby the patient sets the agenda. Aim: To seek palliative care clinicians' perceptions and experiences of Patient-Centered Family Meetings ("Meetings") and their acceptability and feasibility in the inpatient specialist palliative care setting. Design: A qualitative study used semistructured interviews. Theoretical and procedural direction was taken from grounded theory with thematic content analysis using the constant comparative method. Setting/Participants: Interviews were conducted with clinicians (n = 10) at the intervention site who had participated in a Meeting. Results: Four themes were identified: (1) a patient-set agenda gives patients a "voice"; (2) a patient-set agenda and the Meeting model enhances clinicians' understanding of patients and families; (3) the Meeting model was perceived to be acceptable; and (4) the Meeting model was perceived to be only feasible for selected patients. Conclusion: Clinicians perceived that a patient-set meeting agenda with defined questions enhanced their knowledge of the patient's issues and their understanding of the patient and their family's needs. The patients' most important issues often differed from the clinicians' expectations of what might be important to individual patients. There were contrasting views about the acceptability and feasibility of these Meetings as standard practice due to clinician time constraints and the Meeting not being required or relevant to all patients. Given the perceived benefits, the identification of patients and families who would most benefit is an important research priority.