Navigating Community-Based Aged Care Services From the Consumer Perspective: A Scoping Review.

BACKGROUND AND OBJECTIVES: The shift to consumer-directed aged care means that older adults need to play a more active role in navigating the complex aged care system for adequate health and social services. Challenges in the navigation process result in unmet needs and difficulty accessing available resources. This scoping review investigates how aged care navigation is conceptualized in literature and interrogates research on the experiences of older adults navigating community-based aged care services with or without support from their informal carers. RESEARCH DESIGN AND METHODS: This review follows the Joanna Briggs Institute methodological guidelines. PubMed, Scopus, and ProQuest were searched for relevant literature published from 2008 to 2021, supplemented by grey literature and manual reference list searching. Data were extracted using a predefined data-extraction table and synthesized with an inductive thematic analysis. RESULTS: The current conceptualization of aged care navigation focuses on the support provided to older adults, rather than actions taken by older adults themselves. Thematic analysis from the included studies (n = 26) revealed shared themes (lack of knowledge, social networks as information providers, complex care systems) among older adults and informal carers; unique challenges faced by older adults (difficulties with technology, waiting game), and informal carers (structural burden) in aged care navigation. DISCUSSION AND IMPLICATIONS: Findings suggest the need to comprehensively assess individual circumstances including social networks and access to informal carers as predictors of successful navigation. Changes that reduce the complexity of the aged care system and improve coordination will relieve the structural burden experienced by consumers.

Logics of control and self-management in narratives of people living with HIV, hepatitis C and hepatitis B.

In Australia, the response to HIV, hepatitis C and hepatitis B has largely been through the constructed category of 'blood borne viruses' which treats these viruses as an interconnected set of conditions with respect to their mode of transmission. In this paper, we explore how people understand their viral infection, and compare the logics underpinning these different understandings. In-depth interviews were conducted with 61 participants who were either living with a blood borne virus or were the family members of people living with them. Our analysis reveals that the viral infection was often described as 'just a condition that needs to be managed', albeit in potentially exhausting ways. This understanding hinged upon a biomedical logic in which viral invasion was seen as causing illness and in turn necessitating biomedical intervention. In contrast, some participants with hepatitis B presented their infection as a condition unintelligible through Western biomedical logics, defined instead by symptomology - in terms of 'liver disease', and/or 'liver inflammation'. This focus on symptomology calls into question the soundness of prevention and management responses to hepatitis B based in biomedical logics and reveals the extent to which living with a virus involves multiple, sometimes incompatible, cultural logics. The different logics underpinning HIV, hepatitis C and hepatitis B reveal shortcomings of framing these viruses together as a coherent single construct.

The freighted social histories of HIV and hepatitis C: exploring service providers' perspectives on stigma in the current epidemics.

A virus has a social history. In the case of the hepatitis C virus (HCV) and HIV, this history is one involving stigma and discrimination, advocacy and activism, and recent dramatic improvements in treatment. These social histories influence the experience of people who live with the viruses, and those who work with them. One aspect of this is the impact of social changes on the biographical disruption and integration brought about by illness. Healthcare practitioners who see significant improvements in the effectiveness of treatment for a condition over the course of their professional life will incorporate those changes into their own history and their relationship to that condition.This article is based on a study of the experiences of serodiscordance, or mixed infection status, in families living with HIV and two types of viral hepatitis, hepatitis B and hepatitis C. The article explores the perspectives of healthcare workers who work with people affected by these viruses, who were asked about their experiences in working with serodiscordance in families. Interviews revealed that changing social meanings given to bloodborne viruses, and changes to treatment over time, held a significant place in the accounts that service providers gave of their work. In asking them to describe their work with HIV and HCV, we were also asking about work that has been shaped by changing patterns and sources of stigma, and recently reshaped by changes in treatment and outcomes. While typically the experiences of patients and their families are used to investigate the social histories of diagnosis and stigma, the professional perspectives and life stories of the service providers who work with them are also revealing. We heard accounts in which histories as well as current regimes were prominent, illuminated further by insights from the sociology of health on narrative and biographical disruption.

Professional perspectives on serodiscordant family service provision in the context of blood-borne viruses.

In recognition of the broader relational aspects of viral infections, family support is considered important when someone is diagnosed with a blood-borne virus (BBV), such as HIV, hepatitis C (HCV) and hepatitis B (HBV). However, families' own support needs are often not a priority in service provision within the BBV sector. In this article, we draw on qualitative interviews with 20 key informants working in various professional capacities in health, social policy, care and advocacy sectors in Australia, and explore their experiences and perspectives on family inclusivity in their services. Overall, key informants acknowledged the diversity of what constitutes family, and consistently viewed family engagement as beneficial to both diagnosed individuals and the wider familial networks affected by a diagnosis. However, prioritising individual care in support services presented barriers to engaging families, which are further complicated by the role of stigma in shaping the social realities of living with a BBV. Increasing understanding in service provision settings that serodiscordance can be a family experience has the potential to widen this analytic lens to consider the support needs of families in their own right.

Migrant families' access to ECEC and family policies: The Australian and Italian case compared.

This paper analyses in a comparative perspective the degree of convergence in migrant families' access to early childhood education and care (ECEC) and work/family policies in two different welfare state regimes: Italy and in Australia. Using a framework based on the concept of conditionality-or the notion that access to support is conditional and based on an individual's personal and familial characteristics, circumstances or behaviors--the analysis examines the extent to which policies designed to support families with young children are accessible to migrant families. It argues that access to ECEC and family policies is restricted in both Italy and Australia according to a series of conditions, but that these conditions apply differently to people of different migrant statuses. In doing so the paper aims to improve our understanding of how welfare states respond to needs associated with migration for children and families and the extent to which they tend to converge.

New directions in centre-based aged care in Australia: Responding to changing funding models and the COVID-19 pandemic.

OBJECTIVES: Centre-based aged care services are a key site of early intervention and support for people with dementia and their carers. This paper examines the impact of new aged care funding structures on centre-based aged care service accessibility and delivery. It also examines the challenges and opportunities for change facing the sector in the light of the COVID-19 pandemic. METHODS: Semi-structured interviews were conducted online with 29 managers or supervisors of centre-based aged care services in Greater Sydney. RESULTS: The analysis reinforced the essential role of centre-based aged care services in improving the cognitive, physical and psychological health of older people with dementia and their carers. However, the changing funding context and the COVID-19 pandemic have created challenges in access to centre-based services, particularly for the most vulnerable. The challenges created by the COVID-19 pandemic also opened opportunities for the introduction of new models of service practice to meet the individual needs of older people and their carers. CONCLUSIONS: Greater investment in, and flexibility in the funding for, centre-based aged care services is needed to facilitate access for people with dementia and their carers and improve their health and well-being.

Understanding 'risk' in families living with mixed blood-borne viral infection status: The doing and undoing of 'difference'.

'Risk' has long been at the centre of expert and popular perceptions of transmissible and stigmatised blood-borne viral infections, such as HIV and viral hepatitis. There is a substantial body of research on transmission risk among couples with mixed viral infection status (serodiscordance). But we know very little about how families affected by HIV and viral hepatitis engage with understandings of infectiousness and how these shape family relationships in different ways. Guided by cultural theories of risk that build on Mary Douglas' work, we draw on qualitative interviews to explore the 'performativity' of risk in serodiscordant families in Australia. We show how the 'doing' of risk could be constitutive of difference, which unsettled the family connection or deepened existing fault lines. Conversely, the 'undoing' of risk enabled the preservation of the family bond by rejecting difference and reframing risk as an external threat to the family in the form of stigma. We conclude that risk in the context of serodiscordant families had relational implications far beyond viral transmission and consider what our findings might mean for service provision and health promotion campaigns related to blood-borne viruses.

Understanding Barriers to the Realization of Human Rights Among Older Women With Mental Health Conditions.

There is increasing emphasis in research and at the level of international human rights bodies such as the United Nations on the gendered contours of age-based disadvantage and discrimination, and the cumulative effects of gender inequalities over the life-course on outcomes in later life. However, to date, the role of mental health in shaping the age/gender nexus in the realization of human rights has received little attention. In response, this paper aims to 1) elucidate the economic, social and cultural disadvantages and discrimination faced by older women living with mental health conditions; and 2) identify opportunities to protect their human rights. It concludes that older women face inequalities and disadvantages at the intersections of age, gender, and mental health and wellbeing that compromise their capacity to age well, illuminating the urgent need for a UN Convention on the Human Rights of Older Persons that considers the role of mental health in shaping the realization of human rights among older people.

Family imaginaries in the disclosure of a blood-borne virus.

Contemporary sociological work has emphasised that family is not static, but actively shaped by ideas of who and what makes family. Disclosure of an illness, including diagnosis of stigmatised infections such as HIV, hepatitis B virus and hepatitis C virus, can change the dynamics of family relationships. This paper draws on 61 qualitative semi-structured interviews conducted between 2017 and 2019 with people in Australia with one or more of these blood-borne viruses (BBVs) and their family members, to understand the experiences of serodiscordant (mixed viral status) families. Through a thematic analysis, we explore the family imaginaries that participants evoked when describing their disclosure practices in relation to (self-defined) family members, revealing how some participants disclosed in ways that enabled them to shape their family, to maintain boundaries between self and family or to protect family from distress. Participants' accounts of disclosure to family revealed imaginaries of family as a precious web of connections to be nurtured or protected, but also as sites of ambivalent belonging and complex history. We conclude that BBV disclosure practices within families reveal important ideas about families that are imagined in response to the threat of loss, change and stigma.

Intergenerational Programmes bringing together community dwelling non-familial older adults and children: A Systematic Review.

BACKGROUND: Social isolation is associated with an increased risk of adverse health outcomes, including functional decline, cognitive decline, and dementia. Intergenerational engagement, i.e. structured or semi structured interactions between non-familial older adults and younger generations is emerging as a tool to reduce social isolation in older adults and to benefit children and adults alike. This has great potential for our communities, however, the strength and breadth of the evidence for this is unclear. We undertook a systematic review to summarise the existing evidence for intergenerational interventions with community dwelling non-familial older adults and children, to identify the gaps and to make recommendations for the next steps. METHODS: Medline, Embase and PsychInfo were searched from inception to the 28th Sept 2020. Articles were included if they reported research studies evaluating the use of non-familial intergenerational interaction in community dwelling older adults. PROSPERO registration number CRD42020175927 RESULTS: Twenty articles reporting on 16 studies were included. Although all studies reported positive effects in general, numerical outcomes were not recorded in some cases, and outcomes and assessment tools varied and were administered un-blinded. Caution is needed when making interpretations about the efficacy of intergenerational programmes for improving social, health and cognitive outcomes. DISCUSSION: Overall, there is neither strong evidence for nor against community based intergenerational interventions. The increase in popularity of intergenerational programmes alongside the strong perception of potential benefit underscores the urgent need for evidence-based research.

The embodied relationality of blood-borne viruses: How families matter in the context of a stigmatised viral infection.

This paper argues that blood-borne viruses are relationally embodied, providing an alternative ontology to the individualising tendencies in medical science, and a more inclusive analysis of serodiscordance (mixed infection status) than the literature's focus on transmission risk in couples. We know little about the wider world of significant relationships in the lives of those with blood-borne viruses. People with HIV and hepatitis C are in a mixed-status relationship not just with intimate partners, but with other family members too. Drawing on qualitative interviews and phenomenological theory, we make the case that families (broadly defined) matter in the context of stigmatised, transmissible infections in ways that extend beyond individual bodies and beyond the usual preoccupation with risk. Despite recent advances in the treatment of blood-borne viruses, our study shows that these infections continue to be experienced and negotiated through embodied connections to significant others, made meaningful through culturally situated understandings and expectations regarding kinship, affinity, love, shared history and obligations. Our findings encourage broader recognition of these viral infections as intercorporeal phenomena, with families intimately entangled in co-creating the meanings and experiences of disease.

Families Living with Blood-Borne Viruses: The Case for Extending the Concept of "Serodiscordance".

The concept of "serodiscordance" (mixed infection status) is primarily associated with epidemiological concerns about HIV transmission risk in couples. We make the case for extending this concept to include families with mixed HIV and viral hepatitis status. Social research on couples with mixed HIV and hepatitis C status has laid an important foundation for illuminating how experiences of serodiscordance within intimate partnerships are much broader than concerns about risk. This body of work attests to serodiscordance holding promise as a valuable concept for understanding viral infections as socially situated and intensely relational phenomena. However, serodiscordance is still limited as a concept because of its near universal focus on couples. It is rarely applied to wider relationships, including family networks beyond the couple. Despite evidence in the literature that families are affected by blood-borne viruses in multiple social, emotional, financial, and generational ways, the concept of serodiscordance does not capture these broader dynamics. Making serodiscordance more inclusive is an important step in recognising the diverse ways families' everyday lives, relationships, and futures can be entangled with HIV, hepatitis C, and hepatitis B, and for understanding how today's era of effective treatment options might shape the "family life" of viral infections.