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.

The COVID-19 Pandemic: Bereavement Experiences Between Hospital and Home Deaths in Palliative Care.

BACKGROUND: Australian COVID-19 public health measures reduced opportunities for people to communicate with healthcare professionals and be present at the death of family members/friends. AIM: To understand if pandemic-specific challenges and public health measures during the COVID-19 pandemic impacted end-of-life and bereavement experiences differently if the death, supported by palliative care, occurred in a hospital or at home. DESIGN: A cross-sectional online survey was completed by bereaved adults during 2020-2022. Analyses compared home and in-patient palliative care deaths and bereavement outcomes. Additional analyses compared health communication outcomes for those identified as persons responsible or next of kin. SETTING/PARTICIPANTS: Of 744 bereaved people; 69% (n = 514) had a death in hospital and 31% (n = 220) at home. RESULTS: The COVID-19 public health measures influenced people's decision to die at home. Compared to hospital deaths, the home death group had higher levels of grief severity and grief-related functional impairment. Only 37% of bereaved people received information about bereavement and support services. 38% of participants who were at least 12 months postdeath scored at a level suggestive of possible prolonged grief disorder. Levels of depression and anxiety between the two groups were not significantly different. CONCLUSIONS: These findings highlight the need for health services to recognize bereavement as fundamental to palliative and health care and provide pre- and post death grief and bereavement care to ensure supports are available particularly for those managing end-of-life at home, and that such supports are in place prior to as well as at the time of the death.

Neuropalliative care for progressive neurological diseases: A scoping review on models of care and priorities for future research.

BACKGROUND: Neuropalliative care is a newly-defined subspeciality bringing specific aspects of fields of neurology and palliative care together to better meet the complex care needs of people with progressive neurological diseases. Examining these needs would help provide guidance about developing relevant models of care and identify gaps in research knowledge. AIM: To identify current models and approaches to neuropalliative care for people with progressive neurological diseases and the priorities for future research work. DESIGN: A scoping literature review following the methods described by the Joanna Briggs Institute. DATA SOURCES: An electronic search of the literature was undertaken from six sources including MEDLINE (Ovid), EMCARE, PsycINFO and CINAHL covering the years January 2011 to September 2021. RESULTS: Twenty-eight studies were found examining neuropalliative care from the perspectives of 4795 PND patients, 774 informal carers and 138 health professionals. All studies held themes of integrative care, with most studies employing outpatient models of multidisciplinary care. Topics discussed included: overcoming local system-issues, providing education for professionals, patients and carers, early referral and capturing outcome measures for quality-assurance and future research work. CONCLUSIONS: Most models of neuropalliative care described in the international literature are predominantly outpatient, multidisciplinary and integrative. Clinicians typically utilise existing neurology and palliative care infrastructure to provide care. More high-quality research and outcome tools are needed to guide the design of evidence-based palliative care for people with progressive neurological diseases.

The Demoralization Interview: Reliability and validity of a new brief diagnostic measure among medically ill patients.

BACKGROUND: Demoralization is a state of low morale and poor coping that is being increasingly recognized in stressful circumstances, such as illness. Meta-analyses show prevalence of 30% in the medically and 50% in the mentally ill. A brief structured diagnostic interview is needed to assess for and diagnose demoralization. METHODS: The Demoralization Interview (DI) was designed from items of the Demoralization Scale-II (DS-II) and common items used in other clinical interviews. The resultant 26 items were administered to 264 patients with serious progressive medical illnesses, together with the DS-II, measures of depression, anxiety, and quality of life. Rasch analysis was used to co-calibrate the DI against the DS-II. Sensitivity, specificity, and area under the receiver operating characteristics curve (AUROC) were assessed. Concurrent validation was conducted against measures of anxiety, depression, and quality of life. RESULTS: A 14-item Demoralization Interview (DI) with a diagnostic threshold of 6 symptoms generated sensitivity of 78.0%, specificity of 90.9%, and AUROC of 0.84 against the DS-II. Unidimensionality was indicated, with a Cronbach's alpha of 0.81. For respondents with 6 or more symptoms on the DI, 98% recognized a current stressor and 66% described significant distress or functional impairment. Demoralized respondents carried significantly lower quality of life, higher physical disability, and higher depressive and anxiety symptoms. CONCLUSIONS: The DI has good reliability and validity, with a threshold of 6 symptoms supporting a diagnosis of demoralization. It could be used as a stand-alone diagnosis, or as a specifier for adjustment disorder or depression.

An Australian Neuro-Palliative perspective on Huntington's disease: a case report.

BACKGROUND: Huntington's Disease (HD) is an incurable, progressive neuro-degenerative disease. For patients with HD access to palliative care services is limited, with dedicated Neuro-Palliative Care Services rare in Australia. We discuss the experiences of and benefits to a patient with late-stage HD admitted to our Neuro-Palliative Care service. CASE PRESENTATION: We present the case of a patient with a 16-year history of HD from time of initial genetic testing to admission to our Neuro-Palliative Care service with late-stage disease. CONCLUSIONS: Given the prolonged, fluctuating and heterogenous HD trajectory, measures need to be implemented to improve earlier access to multi-specialty integrative palliative care services. Given the good outcomes of our case, we strongly advocate for the role of specialised Neuro-Palliative Care services to bridge the gap between clinical need and accessibility.

Death anxiety interventions in patients with advanced cancer: A systematic review.

BACKGROUND: Death anxiety is a common issue in adult patients with advanced cancer and can have a large impact on quality of life and end-of-life care. Interventions are available to assist but are scarcely used in everyday practice. AIM: To assess quantitative studies on interventions for adult patients with advanced cancer suffering from death anxiety. DATA SOURCES: MEDLINE, PsycINFO, Embase and CINAHL were searched to identify quantitative or mixed studies on death anxiety or relatable existential intervention studies in advanced cancer patients published from 1990 to December 2016. Two reviewers independently screened titles and abstracts and assessed relevant studies for eligibility. Data were then extracted from included studies for analysis. RESULTS: Nine unique quantitative studies were identified, including five randomised controlled trials, involving a total overall of 1179 advanced cancer patients. All studies were psychotherapeutic in nature and centred on existential themes such as meaning, dignity, relationships and spiritual well-being. The therapies investigated shared overlapping themes but varied in duration, therapist experience, training required and burden on patient. Heterogeneity of studies and measures prevented determination of an overall effect size. CONCLUSION: Interventions were identified for this clinical scenario of death anxiety in patients with advanced cancer. Therapies of short duration incorporating spiritual well-being and those evoking a sense of meaning were claimed to be the most beneficial, despite lacking rigorous statistical analysis. More high-quality studies with tailored outcome measures are required to fully evaluate the most effective interventions for death anxiety in patients with advanced cancer.