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Informal caregiving for a person living with glioma can be both rewarding and multidimensionally challenging, given the potential for debilitating symptoms, cognitive impairment or personality changes, as early as diagnosis. There is growing evidence that, due to the demands of care, experiences and feelings of loneliness and isolation among informal caregivers are widespread, and opportunities for quality or meaningful social connectedness are lacking. While considerable research has quantified the causes and effects of loneliness and isolation in informal care contexts, the lived experience of loneliness has received relatively little attention. The aim of this study was to better understand the everyday experiences of a group of home‐based informal caregivers of people living with glioma in Queensland, Australia. Drawing on in‐depth interviews with 32 informal caregivers, purposively sampled, and recruited through a tertiary hospital, in this paper, we explore how the various experiences, demands, and social and relational dynamics in/of informal care (re)produce forms of isolation and loneliness. Using the framework approach to thematic analysis, we derived four themes: (a) the 'need' to be near the care recipient, and the implications for caregiver mobility; (b) the strong sense of responsibility for care, and the virtues of 'good' caring; (c) experiences of loneliness in the company of others and (d) postponement of social connection and minimising the self. The findings, we argue, are reflective of broader social and moral norms and expectations within experiences of home‐based informal care. [ABSTRACT FROM AUTHOR]

Background: The demand for mental health services in Australia is substantial and has grown beyond the capacity of the current workforce. As a result, it is currently difficult for many to access secondary healthcare providers. Within the secondary healthcare sector, however, peer workers who have lived experience of managing mental health conditions have been increasingly employed to intentionally use their journey of recovery in supporting others living with mental health conditions and their communities. Currently, the presence of peer workers in primary care has been limited, despite the potential benefits of providing supports in conjunction with GPs and secondary healthcare providers. Methods: This stepped-wedge cluster randomised controlled trial (RCT) aims to evaluate a lived experience peer support intervention for accessing mental health care in primary care (PS-PC). Four medical practices across Australia will be randomly allocated to switch from control to intervention, until all practices are delivering the PS-PC intervention. The study will enrol 66 patients at each practice (total sample size of 264). Over a period of 3–4 months, 12 h of practical and emotional support provided by lived experience peer workers will be available to participants. Scale-based questionnaires will inform intervention efficacy in terms of mental health outcomes (e.g., self-efficacy) and other health outcomes (e.g., healthcare-related costs) over four time points. Other perspectives will be explored through scales completed by approximately 150 family members or carers (carer burden) and 16 peer workers (self-efficacy) pre- and post-intervention, and 20 medical practice staff members (attitudes toward peer workers) at the end of each study site's involvement in the intervention. Interviews (n = 60) and six focus groups held toward the end of each study site's involvement will further explore the views of participants, family members or carers, peer workers, and practice staff to better understand the efficacy and acceptability of the intervention. Discussion: This mixed-methods, multi-centre, stepped-wedge controlled study will be the first to evaluate the implementation of peer workers in the primary care mental health care sector. Trial registration: Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12623001189617. Registered on 17 November 2023, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=386715 [ABSTRACT FROM AUTHOR]

Informal kinship care families in Australia are a large, hidden population. This article provides an overview of international research and policy developments regarding informal kinship care and considers their relevance to Australia. The benefit to children is identified along with the severe economic burden of care falling on caregiving families. Australian Federal and State policy settings are described in relation to the recognition and support of informal kinship care families, and an overwhelming need for better financial and social support is identified. Ways forward to improve the circumstances of these families are considered, together with areas for future research. [ABSTRACT FROM AUTHOR]

Introduction: Family carers play a crucial role in dementia care. As the condition progresses, people with dementia become increasingly dependent on their carers for all areas of daily living. The risk of carer burnout is significant. One of the more stressful events for family carers is when hospital admission is required for the person they care for. Living in regional Australia adds complexity to the experience. Hospital and health services in regional Australia could use a greater understanding of the issues associated with hospital care to inform patient and carer management, improve outcomes for this population and support the goal of 'ageing in place'. Objective: To explore the experience of carers of people with dementia in regional Australia when hospital care or treatment was required for the person they provide care for. Design: Six family carers living in regional Australia participated in this interpretative phenological study. Individual, semistructured interviews were held and transcribed verbatim shortly after. Data analysis occurred via three key processes: reading and highlighting, coding and grouping, which yielded the major themes and subthemes of the study. Findings: Three major themes and nine subthemes emerged from data analysis. The major themes were: (i) support and supply of specialist care; (ii) travel needs and negotiations; and (iii) empathy and experience make a difference. Discussion: Findings from this study highlight aspects of care that healthcare providers can address to improve outcomes for patients with dementia and their carers. Carers need opportunities to seek clarification and provide input on care plans. Good communication, involvement and relationship building between healthcare staff and carers are vital to achieving optimal patient outcomes. Staff training supporting understanding of appropriate dementia care is essential for improved patient and carer outcomes. Conclusion: Factors related to regional location, including lack of specialist care and support, compound carers' challenges. Healthcare provider education on dementia care and dementia‐friendly processes in hospitals will support optimal patient and carers outcomes. [ABSTRACT FROM AUTHOR]

Aims and objectives: To reduce the likelihood of preventable readmissions, the aim was to investigate how older people (with their family members) managed their chronic health conditions at home following hospital discharge. The objectives explored older people and their family members' perspectives on how discharge plans assisted self‐management of their chronic conditions, their recognition of deterioration and when to seek treatment/re‐attend hospital. Background: Chronic conditions have challenged older adults' self‐management, particularly after hospital discharge and can impact on preventable readmission. Few studies have examined patients' and their family members' perspectives on the management of their conditions at home after hospitalisation. Design: A qualitative exploratory design known as Interpretive Description was utilised. Methods: Purposeful sampling involved 27 community‐dwelling older adults; nineteen were discharged patients with one or more chronic health conditions. Eight nominated family members were also recruited to enhance understanding of the older persons' self‐management at home. Interviews were undertaken and thematic data analysis followed the COREQ guidelines. Results: Five themes emerged: (1) Post‐Discharge Advice; (2) Managing at Home; (3) Recognition and Response to Deterioration; (4) Community Care and Support; and (5) The "Burden" on Others of Post‐Discharge Care. Conclusion: Older people sought a clear plan for self‐management at home prior to discharge. This plan should contain potential signs of deterioration and guidance on future action. We found that support given to older people from family and friends was critical to prevent readmission. In addition, their local General Practitioner and Pharmacist played an essential part in the support of their care. For some, social support services were also important. Nurse telephone follow‐up in the week following discharge was mostly absent. However, this strategy would be strongly recommended. Relevance to clinical practice: To mitigate against preventable readmission, we recommend the above strategies to assist the older person at home with self‐management of their chronic conditions. [ABSTRACT FROM AUTHOR]

Carers of people with dementia experience significant physical, emotional, and social burdens. Needs assessment can provide important information to assist services in providing support to carers to reduce these burdens. However, few studies have examined the prevalence of unmet needs experienced by carers of people with dementia using a quantitative instrument. This study aimed to examine the prevalence and type of unmet needs experienced by carers of people with dementia in Australia. This was a cross-sectional survey of carers providing support to community-dwelling individuals living with dementia. Carers were recruited through geriatric clinics, aged care providers, support services and community organisations. Consenting carers completed a survey including an 80-item study-specific unmet needs instrument for carers (UNI-C) and sociodemographic characteristics. Descriptive statistics were used to identify the most prevalent unmet needs reported by carers. A total of 169 carers (response rate 47%) completed the survey. Most (87%) carers reported at least one unmet need. Carers reported a median of 16.0 (IQR = 24.0; max = 58) out of a possible 80 unmet needs. The most frequently endorsed unmet needs spanned a range of areas including emotional wellbeing, accessing health and aged care services, managing apathy, and finding information. This study highlighted that a large proportion of carers experience unmet needs associated with caring for someone with dementia. Developing and rigorously testing interventions to meet carers' commonly reported unmet needs are warranted. Supplemental data for this article is available online at https://doi.org/10.1080/13607863.2022.2053833. [ABSTRACT FROM AUTHOR]

Background: Trauma continues to place a burden on individuals, communities and health care systems around the world. To help reduce this burden and improve care, trauma registries in Australia and Aotearoa New Zealand collect standardized data on patients admitted with Injury Severity Scores greater than 12. There is currently no agreed minimum data set for trauma patients with Injury Severity Score less than 13, representing an opportunity to provide more data for quality improvement and injury prevention. Methods: A binational, expert, advisory group assessed the value of potential fields for a minimum dataset for low severity trauma. Existing trauma registries in Australia and Aotearoa New Zealand were assessed to ensure compatibility. Results: Thirty‐five data fields met criteria for inclusion in the low‐severity minimum dataset. The fields comprised a subset of the Australia New Zealand Major Trauma Registry and were included in existing low‐severity registries. Conclusion: A minimum data set for low severity has been defined for use in Australia and Aotearoa New Zealand. In addition to high severity trauma data this will provide a standard for data collection that will contribute to quality improvement and injury prevention. [ABSTRACT FROM AUTHOR]

People with dementia are at high risk of malnutrition as a result of progressive symptoms that affect eating. Maximising opportunities to enhance nutrition and strategies to encourage eating are a crucial part of providing care. Caregiver knowledge and a person-centred approach to eating is essential to reduce symptom burden and maintain quality of life. There is currently limited research investigating first person perceptions of eating with dementia, particularly beyond small sample sizes. Therefore, this paper aims to explore community perceptions of how best to encourage eating for people with dementia using findings from an online course. Within the Understanding Dementia Massive Open Online Course, responses to the following statement were collected: 'If I had dementia, the things that might help me to eat include…'. A total of 3,651 participant responses were collected from the 2018 and 2019 course enrolments and analysed using structural topic modelling and secondary thematic analysis. The majority of participants were female, tertiary educated Australians over 50 years old. A third were paid caregivers. Thirteen topics were isolated from topic modelling that can be reduced into six broad categories: food type personalisation, meal choice, meal presentation, eating environment, eating assistance and end of life nutrition. Participant responses demonstrated diverse awareness of important aspects to encourage eating in dementia. Findings support the need for improved uptake of nutritional strategies in practice and education on eating with dementia to support caregivers. [ABSTRACT FROM AUTHOR]

Background: Dementia is a leading cause of death in developed nations. Despite an often distressing and symptom laden end of life, there are systematic barriers to accessing palliative care in older people dying of dementia. Evidence exists that 70% of people living with severe dementia attend an emergency department (ED) in their last year of life. The aim of this trial is to test whether a Carer End of Life Planning Intervention (CELPI), co-designed by consumers, clinicians and content specialists, improves access to end of life care for older people with severe dementia, using an ED visit as a catalyst for recognising unmet needs and specialist palliative care referral where indicated.Methods: A randomised controlled trial (RCT) enrolling at six EDs across three states in Australia will be conducted, enrolling four hundred and forty dyads comprising a person with severe dementia aged ≥ 65 years, and their primary carer. Participants will be randomly allocated to CELPI or the control group. CELPI incorporates a structured carer needs assessment and referral to specialist palliative care services where indicated by patient symptom burden and needs assessment. The primary outcome measure is death of the person with dementia in the carer-nominated preferred location. Secondary outcomes include carer reported quality of life of the person dying of dementia, hospital bed day occupancy in the last 12 months of life, and carer stress. An economic evaluation from the perspective of a health funder will be conducted.Discussion: CELPI seeks to support carers and provide optimal end of life care for the person dying of dementia. This trial will provide high level evidence as to the clinical and cost effectiveness of this intervention.Trial Registration: ACTRN12622000611729 registered 22/04/2022. [ABSTRACT FROM AUTHOR]

Background: Home-based dementia care is common in the Chinese-Australian community. However, dementia education programs for Chinese-Australians in the language of their choice are scarce. The World Health Organization has developed iSupport for Dementia, an online education program for informal caregivers. Cultural adaptation of the program for Chinese-Australian caregivers is an opportunity to address this gap in caregiver support. Aim: The aims of the study were (1) to understand stakeholders' perspectives on the cultural and linguistic appropriateness of the Chinese iSupport for Dementia content and design and (2) to explore factors affecting the future implementation of the Chinese iSupport program in Australia. Methods: A qualitative descriptive design was applied to address the aims of the study. Focus group discussions with Chinese-Australian caregivers and community aged care workers were conducted to collect data. Thematic analysis was used to analyse data. Results: In total, six focus groups were conducted with 18 Chinese-Australian caregivers and 17 care workers. Six themes were identified and described as follows: (1) appropriateness of the Chinese iSupport content; (2) acceptability of the online Chinese iSupport design; (3) motivations to engage in the iSupport program; (4) desire to interact with peers and professional facilitators; (5) concerns about program accessibility; and (6) the need to extend the iSupport program to care workers. Conclusions: Engagement with Chinese-Australian caregivers and care workers will inform further revisions of the Chinese iSupport program contents to ensure the program is culturally congruent to Chinese-Australian caregivers. Factors affecting the implementation of the program identified in the study will be considered in the intervention phase of the program. [ABSTRACT FROM AUTHOR]

Background: Older people with cognitive impairment may have lack of understanding of their health and ability to co‐ordinate care needs. Family carers play a key role in supporting older people but the role of family carers in emergency discharge has not been explored well. Objective: To explore and describe the role and contribution of family carers accompanying the older person with cognitive impairment to the emergency department. Design: A exploratory descriptive study was conducted in which telephone interviews were performed. Setting: Three emergency departments located in metropolitan Sydney, Australia; two major tertiary referral centres and one district hospital. The EQUATOR research checklist (COnsolidated criteria for REporting Qualitative research) (COREQ) was used to report the qualitative study. Subjects: Participants were family carers accompanying people aged ≥64 years with cognitive impairment; with non‐urgent triage classifications; English speaking and eligible for discharge home. Semi‐structured telephone interviews were conducted 2 to 4 weeks after the older person was discharged. Data were reflexively thematically analysed in NVIVO independently by three researchers. Results: Twenty‐eight interviews were conducted. Three key themes were evident: (1) 'communicating knowledge of the older person's health status and usual behaviour'; (2) 'providing advocacy, translation, surrogacy and care co‐ordination'; and (3) 'ensuring safe transition from the emergency department to home'. Conclusions: Study findings detailed how family carers created an important safety net while the older person was in emergency, through advocacy and the communication of vital health information. More importantly, their knowledge influenced the healthcare management of the older person and ensured safe discharge and co‐ordination of care in the community. Relevance to clinical practice: The study identified for older persons with cognitive impairment a safe stay in the ED and transition home from hospital was supported by family carers and assisted to ensure that discharge information was understood and adhered to optimise wellbeing and prevent adverse outcomes. The findings of this study can inform discharge processes for nurses, nurse practitioners and doctors. Additionally, processes to support family carer engagement would optimise older person compliance and better inform healthcare decision‐making and choice for older peoples, family carers. The findings of the study should inform discharge processes to minimise risk of readmission, financial burden and harm. [ABSTRACT FROM AUTHOR]

Background: Families with complex needs face significant challenges accessing and navigating health and social services. For veteran families, these challenges are exacerbated by interactions between military and civilian systems of care, and the density of the veterans' non-profit sector. This qualitative study was designed to gather rich, detailed information on complex needs in veteran families; and explore service providers' and families' experiences of accessing and navigating the veterans' support system. Methods: The study comprised participant background questionnaires (n = 34), focus groups with frontline service providers (n = 18), and one-on-one interviews with veteran families (n = 16) in Australia. The semi-structured focus groups and interviews were designed to gather rich, detailed information on four study topics: (i) health and wellbeing needs in veteran families; (ii) service-access barriers and facilitators; (iii) unmet needs and gaps in service provision; and (iv) practical solutions for improving service delivery. The study recruited participants who could best address the focus on veteran families with complex needs. The questionnaire data was used to describe relevant characteristics of the participant sample. The focus groups and interviews were audio-recorded, transcribed, and a reflexive thematic analysis was conducted to identify patterns of shared meaning in the qualitative data. Results: Both service providers and families found the veterans' support system difficult to access and navigate. System fragmentation was perceived to impede care coordination, and delay access to holistic care for veteran families with complex needs. The medico-legal aspects of compensation and rehabilitation processes were perceived to harm veteran identity, and undermine health and wellbeing outcomes. Recovery-oriented practice was viewed as a way to promote veteran independence and self-management. Participants expressed a strong preference for family-centred care that was informed by an understanding of military lifestyle and culture. Conclusion: The health and wellbeing needs of veteran families intensify during the transition from full-time military service to civilian environments, and service- or reintegration-related difficulties may emerge (or persist) for a significant period of time thereafter. Veteran families with complex needs are unduly burdened by care coordination demands. There is a pressing need for high-quality implementation studies that evaluate initiatives for integrating fragmented systems of care. [ABSTRACT FROM AUTHOR]