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 role of illness perceptions in delayed care-seeking in heart failure: A mixed-methods study.

BACKGROUND: Unclear illness perceptions are common in heart failure. The self-regulation model of illness behaviour highlights factors that may impact how people with chronic illness choose to cope with or manage their condition and has been used to study pre-hospital delay for stroke and acute myocardial infarction. The principles of self-regulation can be applied in heart failure to help illuminate the link between unclear illness perceptions and sub-optimal symptom self-management. OBJECTIVE: Informed by the self-regulation model of illness behaviour, this study examines the role of illness perceptions in coping responses that lead to delayed care-seeking for heart failure symptoms. DESIGN: Mixed-methods phenomenological study. SETTING(S): Quaternary referral hospital - centre of excellence for cardiovascular care and heart transplantation. PARTICIPANTS: Seventy-two symptomatic patients with heart failure participated in a survey assessing illness perceptions. A subset of fifteen individuals was invited to participate in semi-structured interviews. METHODS: Illness perceptions were assessed using the Brief Illness Perception Questionnaire. In-depth semi-structured interviews were conducted to elicit previous care-seeking experiences and decision-making that led to a passive, or active coping response to worsening symptoms. Descriptive statistics were used to report questionnaire findings, and open-ended responses were grouped into descriptive categories. Interpretative phenomenological analysis was undertaken on interview transcripts. RESULTS: Participants perceived little personal control over their condition and mostly attributed heart failure to lifestyle factors such as diet and lack of activity. Cognitive dissonance between perceived self-identity and heart failure-identity led to a highly emotional response which drove coping towards avoidance strategies and denial. CONCLUSIONS: This study demonstrates the use of the principles of self-regulation in heart failure and offers a framework to understand how patient representations and emotional responses can inform behaviour in illness. Findings highlight the value of empowering patients to take control of their health and the need to help align values (e.g. independence) with behaviours (e.g. actively addressing problems) to facilitate optimal symptom self-management.

The Patient Experience After Spontaneous Coronary Artery Dissection.

OBJECTIVE: There is considerable burden of anxiety, depression, and post-traumatic stress disorder in patients with spontaneous coronary artery dissection (SCAD), yet research is limited on the experience and impact of SCAD from the patient perspective. This literature review sought to describe the current state of the literature on the patient experience of SCAD and consequences for patients following a SCAD event from the patient perspective. To better understand how people's experiences of SCAD affect their wellbeing, quality of life, lifestyles, and identity, and what would be useful from the patient perspective, an integrative review was performed. METHODS: An integrative literature review was conducted to understand the experience of SCAD and the post-event implications. Five databases were searched. Search terms included 'spontaneous coronary artery dissection', 'SCAD', 'patient', 'experience', 'perspective', and 'opinion'. English-language, peer-reviewed primary research in people with a diagnosis of SCAD that reflected the patient experience was included. Data indicating the SCAD experience including distress prevalence were extracted into an Excel spreadsheet, and narrative synthesis of included studies followed. FINDINGS: From 325 identified studies, five were included for review, yielding a combined sample of 447 participants. Patients with SCAD reported a lack of information about SCAD and the recovery process, and use of the internet for obtaining information. Patients with SCAD reported challenges in recovery including anxiety associated with fear of recurrence and uncertainty, and a need for greater support. A wide range of negative emotions was reported during and after the SCAD event. Participants reported participating in support groups, with mixed reviews of their appropriateness and effectiveness.

Hospital-service use in the last year of life by patients aged ⩾60 years who died of heart failure or cardiomyopathy: A retrospective linked data study.

BACKGROUND: Understanding patterns of health care use in the last year of life is critical in health services planning. AIM: To describe hospital-based service and palliative care use in hospital in the year preceding death for patients who died of heart failure or cardiomyopathy in Queensland from 2008 to 2018 and had at least one hospitalisation in the year preceding death. DESIGN: A retrospective data linkage study was conducted using administrative health data relating to hospitalisations, emergency department visits and deaths. PARTICIPANTS AND SETTING: Participants included were those aged ⩾60 years, had a hospitalisation in their last year of life and died of heart failure or cardiomyopathy in Queensland, Australia. RESULTS: Of the 4697 participants, there were 25,583 hospital admissions. Three quarters (n = 3420, 73%) of participants were aged ⩾80 years and over half died in hospital (n = 2886, 61%). The median number of hospital admissions in the last year of life was 3 (interquartile range [IQR] 2-5). The care type was recorded as 'acute' for 89% (n = 22,729) of hospital admissions, and few (n = 853, 3%) hospital admissions had a care type recorded as 'palliative.' Of the 4697 participants, 3458 had emergency department visit(s), presenting 10,330 times collectively. CONCLUSION: In this study, patients who died of heart failure or cardiomyopathy were predominantly aged ⩾80 years and over half died in hospital. These patients experienced repeat acute hospitalisations in the year preceding death. Improving timely access to palliative care services in the outpatient or community setting is needed for patients with heart failure.

Elements of Integrated Palliative Care in Chronic Heart Failure Across the Care Continuum: A Scoping Review.

BACKGROUND: Individuals with chronic heart failure experience high symptom burden, reduced quality of life and high health care utilisation. Although there is growing evidence that a palliative approach, provided concurrently with usual treatment improves outcomes, the method of integrating palliative care for individuals living with chronic heart failure across the care continuum remains elusive. AIM: To examine the key elements of integrated palliative care recommended for individuals living with chronic heart failure across the care continuum. DESIGN: Scoping review. DATA SOURCES: Databases searched were CINAHL, Ovid MEDLINE, Scopus and OpenGrey. Studies written in English and containing key strategic elements specific to chronic heart failure were included. Search terms relating to palliative care and chronic heart failure and the Joanna Briggs Institute methodology for scoping reviews was used. RESULTS: Seventy-nine (79) articles were selected that described key elements to integrate palliative care for individuals with chronic heart failure. This review identifies four levels of key strategic elements: 1) clinical; 2) professional; 3) organisational and 4) system-level integration. Implementing strategies across these elements facilitates integrated palliative care for individuals with chronic heart failure. CONCLUSIONS: Inter-sectorial collaborations across systems and the intersection of health and social services are essential to delivering integrated, person-centred palliative care. Further research focussing on patient and family needs at a system-level is needed. Research with strong theoretical underpinnings utilising implementation science methods are required to achieve and sustain complex behaviour change to translate key elements.

Factors influencing care-seeking delay or avoidance of heart failure management: A mixed-methods study.

BACKGROUND: Delayed care-seeking for heart failure symptoms increases the risk of unplanned and frequent hospitalization. Presenting to hospital at a later stage when symptoms are severe requires more complex treatment, contributing to longer lengths of stay and higher risk of mortality. Patient-related factors such as knowledge have been highlighted as key contributors to care-seeking delay, yet little is known about how previous experiences within the healthcare setting, including relationships with providers, influence decisions to engage with health services when required. OBJECTIVE: To assess patient-related factors thought to impact care-seeking, and examine the role of previous healthcare experiences in decisions to seek or avoid professional care. DESIGN: Sequential mixed-methods study with a phenomenological approach. SETTINGS: A cardiology in-patient ward in a quaternary referral hospital in Sydney, Australia. PARTICIPANTS: A total of 72 symptomatic in-patients diagnosed with heart failure. METHODS: Self-efficacy, heart failure knowledge and health literacy were assessed quantitatively. Semi-structured, in-depth interviews were undertaken with a subset of participants to elicit previous healthcare experiences and their influence on seeking care when symptoms worsened. Qualitative data were analyzed using interpretative phenomenological analysis and interpreted in the context of quantitative findings. RESULTS: Three major themes were identified that impacted decisions to seek or avoid professional care: (i) preference for continuity; (ii) previous hospital experience and; (iii) patient-provider relationships. Avoidance of care-seeking was described, despite quantitative data reflecting high levels of self-efficacy, heart failure knowledge (12.3±1.9 out of 15), and above-average health literacy levels (75% adequate - 15% higher than average in heart failure). The qualitative and quantitative data together demonstrate that participants delayed seeking care for heart failure symptoms despite having sound knowledge and self-efficacy to seek professional care when necessary. CONCLUSION: Previous healthcare experience affects patient's subsequent action, despite having skills and heart failure knowledge. Interactions with the healthcare system and those within it may impact decisions to avoid seeking treatment more than patient-related factors such as condition-specific understanding.

Palliative care in chronic heart failure: a theoretically guided, qualitative meta-synthesis of decision-making.

International clinical practice guidelines recommend that patients with chronic heart failure receive timely and high-quality palliative care. However, integrating palliative care is highly variable and dependent on decision-making and care models. This meta-synthesis aimed to examine health care professionals' decision-making processes and explore factors impacting decisions to refer or deliver palliative care in chronic heart failure. The electronic databases SCOPUS, CINAHL, and Medline were searched. Included studies were those that reported health care professionals' perceptions of palliative care in chronic heart failure through qualitative data collection, were written in English, and were peer-reviewed articles. Included articles were analysed using Thomas and Harden's approach. The dual-process theory was used and applied a priori to organise the findings. The perception of palliative care as a transition and active treatment failure fit within the intuitive system of thinking in the dual-process theory. The theme that overlapped into both intuitive and analytical systems of thinking was acquiring patient and illness information themes reflecting the analytical system of thinking were professional role and experience, pre-existing decision pathways, and balancing viewpoints. This meta-synthesis identified factors influencing the decision-making process in referring patients with chronic heart failure to palliative care. The findings from this review highlight the need for further development of decision-making tools or facilitate guidelines to assist health care professionals' shared decision-making to improve patient outcomes.

Patient preferences for heart failure education and perceptions of patient-provider communication.

OBJECTIVE: For people managing chronic illness, such as heart failure, adequate health literacy is crucial to understand the complex information that underpins self-care, yet evidence suggests poor understanding in this patient population. To better understand patients' heart failure comprehension and why knowledge gaps may exist, this study sought to explore perceptions of patient-provider communication and ascertain unmet educational needs and preferences. METHODS: Semi-structured in-depth interviews were conducted with 15 symptomatic inpatients with heart failure. Data collection and analysis occurred simultaneously until saturation was reached. Transcripts were analysed using thematic analysis. RESULTS: Participants relied heavily on providers for HF information and support, expressed numerous unmet educational needs and had mixed feelings about quality of communication. Participants expressed the need for credible, tailored heart failure information that accounted for comorbid conditions and preference for face-to-face information delivery. Knowledge gaps included heart failure pharmacotherapy, symptom appraisal and management, cause and chronicity of heart failure, and a specific action plan for heart failure symptom exacerbation. Barriers to effective patient-provider communication included providers using complex medical terminology, lack of adequately detailed information, relationships that did not foster open communication and participants' memory problems. CONCLUSION: Gaps in knowledge and poor communication may indicate inadequate availability of multidisciplinary heart failure management programmes and/or fidelity to guideline recommendations. PRACTICE IMPLICATIONS: Evaluating heart failure management programmes is important to ensure consistent delivery of best-practice education and care. Nurses play a key role in the delivery of patient-focused health information.