Home symptom management training programme: carer evaluation.

OBJECTIVES: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers' confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines. METHODS: Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview. RESULTS: Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role; (2) the importance of a layered approach to support; and (3) avoiding perceived unnecessary contact with nurses. CONCLUSION: The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home.

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.

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.

An evaluation of an online education programme to improve nurses' ability to support carers to use subcutaneous medicines.

BACKGROUND: Most Australians say they wish to die at home, but many are admitted to inpatient facilities for symptom management. Caring@home resources can be used to support informal carers to manage breakthrough symptoms safely using subcutaneous medicines. Nurses require education about how to teach informal carers to use these resources. AIM: To evaluate the effectiveness and relevance of an online education programme for registered nurses (RNs) about using the caring@home resources. METHODS: Nurses must complete an online survey prior to the commencement of the online education programme and again upon completion to assess their change in skills, knowledge, confidence and attitudes of the RNs. T-tests were conducted to compare average pre- and post-education scores. FINDINGS: The knowledge, skills and confidence of RNs to teach carers improved significantly following the completion of an education programme. There was a significant change in attitude, meaning that the perceived benefit of teaching informal carers to give subcutaneous medicines improved. All reported they would use the resources in their clinical practice. CONCLUSION: The online education programme is an effective and cost-efficient strategy to educate nurses to support informal carers to help manage breakthrough symptoms using subcutaneous medicines.

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.

Patient perspectives of positive messages from clinicians: a qualitative secondary analysis and conceptual model.

Background: A review and meta- analysis of empathic communication and patients' expectations of interventions has shown that if positive messages are delivered there is a small but measurable reduction of pain and anxiety and some improvements in physical outcomes. Aim: To identify elements of health messages that may have a positive impact on patient health outcomes to guide effective nurse-patient- communication. Methods: Data were extracted from each study in a qualitative analysis of a systematic review investigating the health effects of positive messages, and analysed following the principles of thematic analysis. Findings: Central to effective positive messages were good communication skills. Five key features were identified. Discussion: The non-treatment care categories such as cognitive care and emotional care can significantly influence health outcomes across a range of interactions. Conclusion: Strategies to facilitate positivity can be incorporated into nursing education programs designed to improve patient outcomes.

Educational Needs of People Living with Atrial Fibrillation: A Qualitative Study.

Background This study explored the educational and self-management needs of adults living with atrial fibrillation (AF). Methods and Results This is a qualitative study of adults living with AF, clinicians, and expert key stakeholders. Interviews were conducted via a one-to-one semistructured videoconference or phone and transcribed verbatim for thematic analysis. A total of 34 participants were recruited and included in analyses (clinicians n=13; experts n=13, patients n=8). Interviews were on average 40 (range 20-70) minutes in duration. Three key themes were identified: (1) "Patient-centered AF education"; (2) "Prioritizing AF education"; and (3) "Timing AF education." The availability of credible information was perceived as highly variable. Information primarily focused on anticoagulation, or procedural information, as opposed to other aspects of management, such as risk factor reduction. Factors to optimize learning, such as multimedia, apps, case studies, or the use of visuals were perceived as important. Continuity of care, including engagement of caregivers, was important to help develop relationships, and facilitate understanding, while concurrently creating opportunities for timely targeted education. Clinicians described acute care as a suboptimal setting to deliver education. Competing interests aligned with the time-pressured context of acute care were prioritized over patient education. In contrast, patients valued continuity of care. AF education strategies need to pivot from a "one size fits all" approach and modernize to implement a range of approaches. Conclusions There remain many unmet needs in the provision of quality AF education to support self-management. Multimodal offerings and the ability to tailor to individual patient needs are important design considerations for new education programs.

Family carer needs in advanced disease: systematic review of reviews.

BACKGROUND: Family carers are vital in the management and delivery of home-based palliative care. Decision-makers need to know what the most commonly expressed unmet needs of family carers are to target available support services. AIM: To identify the most commonly expressed needs of family carers of people with an advanced disease, assess the quality of current evidence, and set an agenda for future research and clinical practice. DESIGN: A systematic review of reviews, prospectively registered on PROSPERO. Study quality was assessed using the Joanna Briggs Institute critical appraisal checklist for systematic reviews and research syntheses. DATA SOURCES: MEDLINE, Embase, Emcare, PsycINFO, CINAHL, Informit and Cochrane Library were searched for reviews about the needs of carers looking after patients with advanced disease from 2010 to 2020. RESULTS: Findings from 21 reviews identified emotional support, disease-specific knowledge, carer role responsibilities, self-care and general practical support as the most commonly expressed needs expressed by family carers. Additionally, access to professional services, formal education opportunities and communication with health professionals were identified as caregivers' preferred ways of having these needs met. Extraction of carer-specific needs was challenging at times as results were often combined with patient results in reviews. CONCLUSION: Practical difficulties exist in effectively resourcing services to meet the needs of family carers. Information regarding the most commonly expressed needs shared by caregivers and their preferred delivery source can provide an opportunity to focus available support services to achieve the highest possible impact for carers of patients with advanced disease. PROSPERO REGISTRATION NUMBER: CRD42018088678.

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.

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.

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.

Insights from Australians with respiratory disease living in the community with experience of self-managing through an emergency department 'near miss' for breathlessness: a strengths-based qualitative study.

OBJECTIVES: Breathlessness 'crises' in people with chronic respiratory conditions are a common precipitant for emergency department (ED) presentations, many of which might be avoided through improved self-management and support. This study sought insights from people with experience of ED 'near misses' where they considered going to the ED but successfully self-managed instead. DESIGN AND METHODS: A qualitative approach was used with a phenomenological orientation. Participants were eligible if they reported breathlessness on most days from a diagnosed respiratory condition and experience of ≥1 ED near miss. Recruitment was through respiratory support groups and pulmonary rehabilitation clinics. Semistructured interviews were conducted with each participant via telephone or face-to-face. Questions focused on ED-related decision-making, information finding, breathlessness management and support. This analysis used an integrative approach and independent coding by two researchers. Lazarus and Cohen's Transactional Model of Stress and Coping informed interpretive themes. RESULTS: Interviews were conducted with 20 participants, 15 of whom had chronic obstructive pulmonary disease. Nineteen interviews were conducted via telephone. Analysis identified important factors in avoiding ED presentation to include perceived control over breathlessness, self-efficacy in coping with a crisis and desire not to be hospitalised. Effective coping strategies included: taking a project management approach that involved goal setting, monitoring and risk management; managing the affective dimension of breathlessness separately from the sensory perceptual and building three-way partnerships with primary care and respiratory services. CONCLUSIONS: In addition to teaching non-pharmacological and pharmacological management of breathlessness, interventions should aim to develop patients' generic self-management skills. Interventions to improve self-efficacy should ensure this is substantiated by transfer of skills and support, including knowledge about when ED presentation is necessary. Complementary initiatives are needed to improve coordinated, person-centred care. Future research should seek ways to break the cyclical relationship between affective and sensory-perceptual dimensions of breathlessness.