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.

I didn't want to remember memories of caring, but I can't help it": A qualitative study of the experiences of bereaved Iranian carers with elevated levels of prolonged grief symptoms.

The lived experience of caring for people with cancer and the influence of culture on Iranian carers who have elevated levels of prolonged grief symptoms after the death has received little in-depth attention. Bereaved carers (N = 17) were interviewed. All showed high levels of prolonged grief symptoms. Thematic analysis resulted in four overarching themes: unfamiliarity with cancer, high involvement in carer's role, lack of processing events, and emptiness. The way that carers of cancer patients understand and cope with their caring role and their dominant cultural context can make their grieving process complex.

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.

Supportive care of patients diagnosed with high grade glioma and their carers in Australia.

PURPOSE: This study aimed to: determine the supportive care available for Australian patients with High Grade Glioma (HGG) and their carers; identify service gaps; and inform changes needed to implement guidelines and Optimal Care Pathways. METHODS: This cross-sectional online survey recruited multidisciplinary health professionals (HPs) who were members of the Cooperative Trials Group for Neuro-Oncology involved in management of patients diagnosed with HGG in Australian hospitals. Descriptive statistics were calculated. Fisher's exact test was used to explore differences between groups. RESULTS: 42 complete responses were received. A majority of MDT meetings were attended by a: neurosurgeon, radiation oncologist, medical oncologist, radiologist, and care coordinator. Less than 10% reported attendance by a palliative care nurse; physiotherapist; neuropsychologist; or speech therapist. Most could access referral pathways to a cancer care coordinator (76%), neuropsychologist (78%), radiation oncology nurse (77%), or psycho-oncologist (73%), palliative care (93-100%) and mental health professionals (60-85%). However, few routinely referred to an exercise physiologist (10%), rehabilitation physician (22%), dietitian (22%) or speech therapist (28%). Similarly, routine referrals to specialist mental health services were not standard practice. Nearly all HPs (94%) reported HGG patients were advised to present to their GP for pre-existing conditions/comorbidities; however, most HPs took responsibility (≤ 36% referred to GP) for social issues, mental health, symptoms, cancer complications, and treatment side-effects. CONCLUSIONS: While certain services are accessible to HGG patients nationally, improvements are needed. Psychosocial support, specialist allied health, and primary care providers are not yet routinely integrated into the care of HGG patients and their carers despite these services being considered essential in clinical practice guidelines and optimal care pathways.

Brain cancer patients' levels of distress and supportive care needs over time.

PURPOSE: This study aimed to describe patient self-reported distress over time and how this was associated with wellbeing, and supportive care needs over a 6-month period from commencing chemoradiotherapy for high grade glioma (HGG). METHODS: In this prospective cohort study, participants completed surveys at three time points: before chemoradiotherapy, at 3 and 6 months. These included Distress Thermometer, Functional Assessment of Cancer/Brain Cancer Treatment-general (Fact-G/FACT-BR), Supportive Care Needs Scale (SF-34) and Brain Tumour Specific subscale. Patient survival time was also collected. Group-based trajectory modelling was performed. Multinominal logistic regression assessed variables associated with different distress trajectory groups. RESULTS: One hundred and sixteen participants completed assessments at baseline, 89 participants at 3 and 64 at 6 months. Four distress trajectory groups were identified; consistent low distress (18%), low to high distress (38%), high-to low distress (24%) and consistent high distress (19%). Younger participants tended to report decreased distress over time, whereas older participants reported consistently high distress. High distress trajectory participants had less education, lower physical wellbeing, more unmet needs, but higher functional wellbeing compared to the low to high distress trajectory. The number of unmet needs paralleled the patterns of distress over time. The highest unmet needs in people with HGG and high distress were disease specific changes in mental ability and physical side effects. CONCLUSION: This study demonstrates people with HGG experience ongoing distress and highlights a need for continuous distress and unmet needs screening and referrals.

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.

Help-seeking experiences of bereaved adolescents: A qualitative study.

Despite the potentially devastating effects of a death on the lives of adolescents, little is known about their help-seeking experiences. We interviewed by telephone 39 bereaved adolescents on their help-seeking experiences. Thematic analysis resulted in three themes: Formal support, Informal support and School-related support. Participants provided a critical appraisal of positive and negative experiences, and noted barriers and facilitators for help-seeking. As adolescents bereaved through suicide may receive less social support, professional help is a much-needed auxiliary. Parental encouragement is important in accessing adequate professional help.

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.

Long-term prevalence and predictors of prolonged grief disorder amongst bereaved cancer caregivers: A cohort study.

CONTEXT: The short-term impact of prolonged grief disorder (PGD) following bereavement is well documented. The longer term sequelae of PGD however are poorly understood, possibly unrecognized, and may be incorrectly attributed to other mental health disorders and hence undertreated. OBJECTIVES: The aims of this study were to prospectively evaluate the prevalence of PGD three years post bereavement and to examine the predictors of long-term PGD in a population-based cohort of bereaved cancer caregivers. METHODS: A cohort of primary family caregivers of patients admitted to one of three palliative care services in Melbourne, Australia, participated in the study (n = 301). Sociodemographic, mental health, and bereavement-related data were collected from the caregiver upon the patient's admission to palliative care (T1). Further data addressing circumstances around the death and psychological health were collected at six (T2, n = 167), 13 (T3, n = 143), and 37 months (T4, n = 85) after bereavement. RESULTS: At T4, 5% and 14% of bereaved caregivers met criteria for PGD and subthreshold PGD, respectively. Applying the total PGD score at T4, linear regression analysis found preloss anticipatory grief measured at T1 and self-reported coping measured at T2 were highly statistically significant predictors (both p < 0.0001) of PGD in the longer term. CONCLUSION: For almost 20% of caregivers, the symptoms of PGD appear to persist at least three years post bereavement. These findings support the importance of screening caregivers upon the patient's admission to palliative care and at six months after bereavement to ascertain their current mental health. Ideally, caregivers at risk of developing PGD can be identified and treated before PGD becomes entrenched.

'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.

"Don't bother about me." The grief and mental health of bereaved adolescents.

Death of a relative or friend is a potentially disruptive event in the lives of adolescents. To provide targeted help, it is crucial to understand their grief and mental health experiences. Thematic analysis of 39 semistructured telephone interviews yielded two themes: Grieving apart together and Personal growth. High self-reliance and selective sharing were common. Feelings of guilt and "why" questions seemed more pronounced among the suicide bereaved. There was strong evidence of personal growth, increased maturity, and capacity to deal with personal mental health/suicidality. Despite its devastating effects, experiencing a death can be a catalyst for positive mental health.

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.

Measuring delirium point-prevalence in two Australian palliative care inpatient units.

BACKGROUND: Internationally, delirium prevalence in palliative care is reported to range between 26-88%, yet little is known about the occurrence of delirium in Australian palliative care inpatient populations. AIMS: To: 1) ascertain 24-hour delirium point-prevalence in an Australian palliative care inpatient population; 2) test the feasibility and acceptability of the delirium measurement methodology. METHODS: This was a prospective cross-sectional study. Delirium was measured in patients of two palliative care units using the Nursing Delirium Screening Scale, Memorial Delirium Assessment Scale and DSM-5 diagnostic criteria. Descriptive statistics were used to report patient demographics, palliative care phase, function, delirium measure completion, and proportion of patients with a positive screen and diagnosis. RESULTS: Patients (n=47) had a mean age of 74 years (SD+10) and mostly malignant diagnoses (96%). All patients were screened for delirium, but few were capable of completing the Memorial Delirium Assessment Scale (n=2). One-third of patients (34%) screened positive for delirium and 19% were diagnosed as delirious according to the DSM-5. CONCLUSION: The Nursing Delirium Screening Scale and physician application of DSM-5 proved feasible and acceptable, while the Memorial Delirium Assessment Scale did not. Patients' advanced age and proportions screening positive for delirium and diagnosed as delirious attest to the need to rapidly recognise, assess and respond to patients experiencing this distressing disorder while being cared for in palliative care inpatient settings.

Nurse perceptions of the Nursing Delirium Screening Scale in two palliative care inpatient units: a focus group study.

AIMS AND OBJECTIVES: To explore nurse perceptions of the feasibility of integrating the Nursing Delirium Screening Scale into practice within the inpatient palliative care setting. BACKGROUND: Delirium occurs frequently in palliative care inpatient populations, yet is under-recognised. Exploring feasibility of delirium screening tools in this setting can provide insights into how recognition can be improved. DESIGN: This was a qualitative study using a focus group methodology. METHOD: Four semi-structured focus groups were conducted with 21 nurses working in two Australian palliative care units. Focus groups were digitally recorded and transcribed verbatim. Thematic content analysis was used to analyse the data. RESULTS: Three major themes were identified: (1) Delirium screening using the Nursing Delirium Screening Scale is feasible, but then what? (2) Nuances, ambiguity and clinical complexity; and (3) Implementing structured processes requires firmer foundations. Themes describe how nurses perceived the Nursing Delirium Screening Scale to be an easy and brief screening tool which raised their awareness of delirium. They were largely willing to adopt it into practice, yet had uncertainty and misunderstandings of the tool specifically and delirium screening generally, application in a palliative care context, interventions for delirium and impact of screening on medical practice. CONCLUSION: The Nursing Delirium Screening Scale is feasible for use in a palliative care inpatient setting, but requires investigation of its psychometric properties before routine use in this patient population. RELEVANCE TO CLINICAL PRACTICE: Nurses require understanding of delirium, tailored guidance and a united approach with doctors to support their effective use of a delirium screening tool in the palliative care unit. Delirium practice change in this setting will also require nurses to become more active leaders and collaborators within their interdisciplinary teams.

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.