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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. [ABSTRACT FROM AUTHOR]

This study describes the impact of multiple deaths on nursing staff who work exclusively with palliative care patients in the community and identifies the types of workplace support required after the death of a patient. A self-report questionnaire was mailed to community palliative care nursing staff (n = 101). Fifty-nine questionnaires were returned (58% response rate). Requesting workplace support following the death of a patient was associated with higher levels of emotional exhaustion (P =.001) and depersonalization (P =.04). Registered nurses with less than 10 years community care experience reported higher levels of depersonalization (P =.01) and lower levels of personal accomplishment (P =.03). A reported lack of training in grief responses was associated with depression (P =.02), guilt (P =.03), and physical distress (P =.02). Peer debriefing was identified as the most appropriate workplace support; however, most respondents reported they lacked debriefing skills, and this was associated with lower levels of personal accomplishment (P =.01). Staff working in this community palliative care service were not adversely affected by the deaths of their patients. It appears that training in grief responses is psychologically protective. Key recommendations for workplace support include training in debriefing, communication skills around death and dying, grief responses, and access to workplace-based complementary therapies. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To understand patients' experiences of High Grade Glioma and identify and describe information and support needs along the disease trajectory. METHODS: Semi-structured interviews were conducted with 19 patients. Data was analysed using grounded theory and the constant comparative method. RESULTS: Four major themes were identified: (1) feelings of uncertainty around prognosis and quality of life; (2) the need for individualised information; (3) dependence on carers due to cognitive deficits, loss of balance and inability to drive; and (4) communication with health professionals around prognostic uncertainty and disease progression with communication barriers due to complex language deficits. CONCLUSION: Previous studies in HGG pre-date the current combined modality standard of care, or examined a mixed population. This study has found that patients with HGG have needs that differ from other patients with terminal malignancy and that these needs change over time with disease progression. PRACTICE IMPLICATIONS: This study has identified that patients with brain tumours may have unique needs. Health professionals need to clarify patients' information and support needs and be aware that these change over and within time. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To determine patients' information, emotional and support needs at the completion of treatment for a haematological malignancy. METHODS: A self-report questionnaire was mailed to 113 adult patients. RESULTS: Sixty-six questionnaires were returned. The most frequently endorsed patient needs related to care co-ordination and help to manage the fear of recurrence. The most frequently endorsed unmet needs included managing the fear of recurrence, the need for a case-manager and the need for communication between treating doctors. Predictors of unmet needs included younger patients (p=0.01), marital status (p=0.03) and employment (p=0.03). Almost two-thirds of patients (59%) reported they would have found it helpful to talk with a health care professional about their experience of diagnosis and treatment at the completion of treatment and endorsed significantly more need in the arenas of Quality of Life (p=0.03) and Emotional and Relationships (p=0.04). CONCLUSION: This study provides valuable data on haematological cancer patients' needs in the first 12 months of finishing treatment. It appears that many needs emerge or remain unresolved at this time. PRACTICE IMPLICATIONS: An opportunity for patients to talk with a health professional about making the transition from active treatment to extended survivorship may be helpful. [ABSTRACT FROM AUTHOR]

INTRODUCTION: Radiotherapy is a common treatment for breast cancer. However, previous studies have shown that women who present for radiotherapy fear its use and associated side effects. The aims of this study were to develop further understanding of breast cancer patients' fears of radiotherapy, ascertain how patients deal with these fears and determine the best time in the treatment planning trajectory for health professionals to address these concerns. METHODS: Semi-structured interviews were conducted with early breast cancer patients at four time points during their experiences of radiotherapy. Grounded theory was used to analyse the data. Symbolic interactionism informed data interpretation. RESULTS: Thirty-four participants were interviewed. The two main themes that emerged prior to treatment commencement were 'fears about receiving radiotherapy' and 'ways of coping with the fear of radiotherapy'. Sub-themes that emerged as components of the theme 'fears about receiving radiotherapy' were: 'fearing the unknown', 'getting burnt', 'damaging internal parts' and 'anticipating tiredness'. Patients were able to cope with their fears by trying not to worry about their fears and by seeking information. Many patients found that their fears about radiotherapy were much worse than their actual experiences of receiving treatment and the side effects they experienced. DISCUSSION/CONCLUSION: In discussing radiotherapy with patients, health professionals have a window of opportunity at the planning appointment, prior to the commencement of radiotherapy, to assess patients' understanding and concerns about radiotherapy, listen to their fears, address meanings they assign to radiotherapy and provide reassurance about radiotherapy and the management of side effects. [ABSTRACT FROM AUTHOR]

A detailed examination of the process of genetic counseling has been identified as a priority area for research by previous authors. This multicenter longitudinal study examined the process and content of genetic counseling in initial consultations with women from high-risk breast cancer families. One hundred and fifty-eight consultations with women unaffected and affected with breast cancer were audio taped and transcribed verbatim. A detailed coding system was developed. Clinical geneticists and genetic counselors demonstrated consistently good practice in giving detailed information on essential aspects related to familial breast cancer such as screening and management, genetic testing, breast cancer genetics, and prophylactic surgery. Eliciting emotional concerns and facilitating communication were found to be inconsistently present. As clinical practice guidelines and the general communication literature emphasize the importance of these factors, this is an area where training in or self-monitoring of such behaviors may assist consultants to further develop these skills. [ABSTRACT FROM AUTHOR]

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., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Ivynian et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: The COVID-19 pandemic disrupted many areas of life, including culturally accepted practices at end-of-life care, funeral rites, and access to social, community, and professional support. This survey investigated the mental health outcomes of Australians bereaved during this time to determine how these factors might have impacted bereavement outcomes., Methods: An online survey indexing pandemic and bereavement experiences, levels of grief, depression, anxiety, and health, work, and social impairment. Latent class analysis (LCA) was used to identify groups of individuals who shared similar symptom patterns. Multinomial regressions identified pandemic-related, loss-related, and sociodemographic correlates of class membership., Results: 1911 Australian adults completed the survey. The LCA identified four classes: low symptoms (46.8%), grief (17.3%), depression/anxiety (17.7%), and grief/depression/anxiety (18.2%). The latter group reported the highest levels of health, work, and social impairment. The death of a child or partner and an inability to care for the deceased due to COVID-19 public health measures were correlated with grief symptoms (with or without depression and anxiety). Preparedness for the person's death and levels of pandemic-related loneliness and social isolation differentiated all four classes. Unemployment was associated with depression/anxiety (with or without grief)., Conclusions: COVID-19 had profound impacts for the way we lived and died, with effects that are likely to ricochet through society into the foreseeable future. These lessons learned must inform policymakers and healthcare professionals to improve bereavement care and ensure preparedness during and following future predicted pandemics to prevent negative impacts.

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 β = 2.85, 95% CI 0.76-4.93) and all follow-up timepoints including 12 months (model β = 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., (© 2023. The Author(s).)

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.

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., Competing Interests: The authors declare that there is no conflict of interest., (© Philippa J. Cahill et al., 2021; Published by Mary Ann Liebert, Inc.)

Background: With the introduction of New South Wales Ambulance Authorised Palliative Care Plans within a metropolitan palliative care service, the perspectives of patients, caregivers and clinicians and their understandings of the processes involved in completing the Plans were investigated., Methods: This qualitative sub-study used semi-structured interviews. Nineteen patients and caregivers who had received an Ambulance Palliative Care Plan and 10 clinicians who completed the Plans were interviewed (n=4) or participated in a focus group (n=6). Grounded theory provided theoretical and procedural direction. Thematic content analysis utilized the constant comparative method., Results: Thematic analysis of patient/caregiver interviews revealed four major themes (I) a lack of involvement in signing the Plan; (II) a need for clear communication about the Plan; (III) trust in the handing over of difficult decisions to family; and (IV) control over where to receive end of life care. Patients indicated that they had little understanding or memory of what the document was or of its purpose, and there were some significant caregiver anxieties about the Plans. Those who were clear on the rationale for the Ambulance Palliative Care Plan demonstrated more prognostic awareness about their condition and the benefits or burdens of resuscitation and treatment. Clinicians identified the main benefit as avoidance of Emergency Department (ED) admission and for patients to be able to choose their preferred place of death. Barriers were mainly systemic and included a lack of clarity around the signature processes and the early implementation of the Plan where the palliative care service was new to patients and families., Conclusions: The Ambulance Palliative Care Plans are a complex intervention that are sometimes misunderstood by patients, particularly those who are very unwell or who have little prognostic awareness. Clinicians perceive the major benefit to be avoidance of admission to the emergency department.

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.

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.

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.

This study aimed to establish whether Pastoral Care (PC) visits were an effective component of a hospitalized patient's overall health experience. Outcomes of PC visits were reported by 369 patients in 7 sites across Australia. The patient reported outcomes of PC visits included: the patients felt they could be honest with themselves, with a sense of peace, a better perspective of their illness, less anxiety, and felt more in control. Five factors of the PC visit significantly related to higher patient's overall outcomes: (a) having more Pastoral Care visits ( p  < 0.5 0 R 0.778, CI 0.17-1.38); (b) the patient was able to talk about what was on their mind ( p  < 0.01, OR1.48, CI 0.58-2.37); (c) they had something to be hopeful about ( p  < 0.01 OR1.18, CI 0.51-1.85); 4); the visit focused on decisions about the patient's health care ( p  < 0.05, OR0.70, CI 0.05-1.35); and (d) a belief in God/Higher Being ( p  < 0.01, OR 1.01, CI 0.43-1.71).

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.

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.

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.

Objective: To examine the effectiveness of a multifaceted complementary therapies intervention, delivered in a systematic manner within an Australian public hospital setting, on quality of life and symptom distress outcomes for cancer patients., Methods: Adults receiving treatment for any form of cancer were eligible to participate in this study. Self-referred participants were offered a course of six complementary therapy sessions. Measures were administered at baseline, and at the third and sixth visit. The primary outcomes were quality of life and symptom distress. Linear mixed models were used to assess change in the primary outcomes., Results: In total, 1376 cancer patients participated in this study. The linear mixed models demonstrated that there were significant improvements in quality of life and significant reductions in symptom distress over six sessions. Body-based therapies demonstrated significantly superior improvement in quality of life over counselling, but no other differences between therapies were identified. Reduced symptom distress was not significantly associated with any particular type of therapy., Conclusion: A self-selected complementary therapies intervention, provided in an Australian public hospital by accredited therapists, for cancer patients significantly mproved quality of life and reduced symptom distress. The effect of this intervention on quality of life has particular salience, since cancer impacts on many areas of people's lives and impairs quality of life., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Background: Despite family meetings being widely used to facilitate discussion among patients, families, and clinicians in palliative care, there is limited evidence to support their use. This study aims to assess the acceptability and feasibility of Patient-Centred Family Meetings in specialist inpatient palliative care units for patients, families, and clinicians and determine the suitability and feasibility of validated outcome measures from the patient and family perspectives., Methods: The study is a mixed-methods quasi-experimental design with pre-planned Patient-Centred Family Meetings at the intervention site. The patient will set the meeting agenda a priori allowing an opportunity for their issues to be prioritised and addressed. At the control site, usual care will be maintained which may include a family meeting. Each site will recruit 20 dyads comprising a terminally ill inpatient and their nominated family member. Pre- and post-test administration of the Distress Thermometer, QUAL-EC, QUAL-E, and Patient Health Questionnaire-4 will assess patient and family distress and satisfaction with quality of life. Patient, family, and clinician interviews post-meeting will provide insights into the meeting feasibility and outcome measures. Recruitment percentages and outcome measure completion will also inform feasibility.Descriptive statistics will summarise pre- and post-meeting data generated by the outcome measures. SPSS will analyse the quantitative data. Grounded theory will guide the qualitative data analysis., Discussion: This study will determine whether planned Patient-Centred Family Meetings are feasible and acceptable and assess the suitability and feasibility of the outcome measures. It will inform a future phase III randomised controlled trial., Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12616001083482 on 11 August 2016., Competing Interests: The St Vincent’s Hospital Sydney Human Research Ethics Committee (reference: HREC/15/SVH/33) approved this study. The trial has been registered with the Australian New Zealand Clinical Trials Group (ACTRN12616001083482). Recruitment to the study has not commenced, and therefore, no data is included in this manuscript.Not applicableThe authors declare that they have no competing interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Purpose: The aim of the current study was to determine how carer needs changed longitudinally and understand associations between unmet needs and distress., Methods: Family carers of patients with high-grade glioma (HGG) were recruited. Carers completed questionnaires during patients' chemoradiotherapy (T1), 3 months (T2) and 6 months (T3) including the following: the Distress Thermometer, the General Health Questionnaire-12, the Partner and Carer Supportive Care (PCS) Needs Scale and its supplement the Access to Services Needs Scale and the Brain Tumour Specific Supportive Care Needs Scale. Linear latent growth models were applied., Results: The time 1 questionnaire was completed by 118 carers; 70 carers provided responses at time 3. While the mean numbers of elevated (moderate to high) needs remained stable over time, the specific needs changed. The most frequently reported PCS needs included the impact of caring on the carer's working life or usual activities, finding more accessible parking, making life decisions in the context of uncertainty, reducing stress in the patient's life and understanding the patient's experience. The most frequently reported need unique to carers of a brain tumour patient was for information on adjusting to cognitive changes in the patient. Other prominent needs included managing difficult aspects of the patient's behaviour and adjusting to changes in the patient's personality, both of which increased over time. Higher numbers of unmet needs were associated cross-sectionally with higher distress levels., Conclusion: Carers of people with HGG remain highly distressed and their needs evolve over time, indicating a requirement for ongoing evaluation of unmet needs and interventions to address carer psychological morbidities.