Carers NSW 2014 carer survey: main report

Executive Summary The biennial Carers NSW Carer Survey collects information about carers in NSW to inform the organisation・s direction, support and systemic advocacy for all carers across NSW. The 2014 survey collected more extensive and detailed data than any previous Carer Survey and has established a framework to guide future surveys. This report provides an overview of the main findings from the survey data, with future publications to investigate specific issues in greater depth. The survey was completed by 1,684 carers - 84% of whom were female, and over half were aged between 45 and 64 years. A significant majority were the main provider of care for those they supported. Approximately one in three had experienced a long-‐term illness or disability themselves within the previous year. While the demographic profile of survey respondents indicated a wide range of caring relationships and experiences, comparisons with population-‐based statistics highlight that this sample is not representative of the broader NSW carer population. This limits the generalisability of survey findings, however, it also allows for more detailed data analysis to be conducted within the more highly represented sub-‐groups of carers, and also suggests areas for improved data collection in future surveys. Carers generally framed their reasons for caring in a positive way, with more than twice as many wanting to take on their caring roles than felt they had no choice. Nevertheless, a significant proportion indicated that no one else assisted them or that they would not be able to find help if they needed a break. Significantly, over one quarter of respondents reported providing more than 70 hours of care per week. This finding is particularly important, since associations were found between the hours of care provided per week, the length of caring roles, and the prevalence of carers\u27 long‐term illness or disability. In line with a great deal of previous literature, the wellbeing of carers in this survey was low compared to the general Australian population. Despite this, carers consistently emphasised the positive value of caring as being greater than the negative impacts. This report highlights those carers who are at greater risk of experiencing low wellbeing, including those with more intensive caring demands and those with long-‐term illnesses or disabilities. At the same time, male carers and older carers tended to report higher levels of wellbeing. Amongst carers who were not in paid employment, more than one in two had stopped working because of their caring responsibilities. Notably, these carers reported poorer wellbeing than those who had stopped working for other reasons. A large majority of working carers indicated that their employers knew about their caring responsibilities, but one in four did not feel supported to balance work and care. Survey responses also indicated that many carers experience some degree of conflict in balancing their caring responsibilities, finances and career progression. Carers reported using local doctors and family/friends for support more than any other source, as well as being restricted from accessing services by the cost, not knowing what was available, and their caring responsibilities taking priority. A majority of carers were not currently accessing supportive services for themselves and interestingly, most did not want to. When carers were satisfied with the services received by the person(s) they cared for and felt more included by service providers, they were more likely to report better wellbeing outcomes. Carers of people with a disability were invited to share their expectations of the impact of person centred approaches and individualised funding to the disability service sector. Awareness of these concepts had increased since the Carers NSW 2012 Carer Survey, with expectations being more positive than negative. Notably, carers who had practical experience of individualised funding packages were much more positive about their introduction than those yet to experience them. Former carers were also invited to complete the survey, with 146 responses being received. Their previous caring roles had usually ended through the death of the person they cared for or the care recipient\u27s admission into residential care facilities. Very few indicated that they had stopped caring because they could no longer cope, highlighting carers\u27 resilience and dedication to their caring roles. The data collected in this survey will inform a range of advocacy and research work. Importantly, the Carers NSW 2014 Carer Survey makes a significant contribution to the evidence base regarding carers in NSW, with the main findings indicating implications for the recognition and support of carers by service providers, governments, and the wider community. &nbsp

Taking Responsibility: Psychological and Attitudinal Change through a Domestic Violence Intervention Program in New South Wales, Australia

Literature widely reports the negative impacts of domestic violence at individual, family, and societal levels. Intervention programs that effectively assist violent men to develop alternate ways of relating, and thus enhance the safety of women and children, are of significant value to governments and the community. This study evaluates the effectiveness of one such program in promoting change in relevant attitudes and psychological constructs. Program participants completed pre- and post-group surveys containing validated scales that measured their gender equity beliefs, self-esteem, mastery, and psychological distress. Over the duration of program attendance, positive changes were evident regarding men’s self-esteem, mastery, and psychological distress, however, no significant change in gender equity beliefs was apparent. The positive changes evident amongst participants indicate beneficial outcomes from group work participation in areas that have been identified as risk factors for violent behaviour.  The results also suggest that intervention programs would benefit from an increased focus on gender equity beliefs, and that further research is necessary on the extent to which this focus could improve attitudes, and consequently promote safety for women and children

The carer persona: Masking individual identities

According to Jungian theory, ‘persona’ is a concept reflecting a compromise between the individual and society. In mediating between a person’s subjective inner world and the external social world, the persona represents a generalised idea of the self which builds up from experiences of interacting with society. Such reflections of self-identity can therefore develop across multiple domains of a person’s life, culminating in understandings of self in a variety of specific roles. The existence of multiple personas can be clearly demonstrated in the context of people providing unpaid care for a family member or friend who has a disability, mental illness, chronic condition, or who is frail. Carers are likely to possess multiple roles as an individual, existing across various social and personal domains. This paper argues that in caring for loved one, a compromise takes place between individual selves and the social caring role. That is, the ‘carer persona’ can mask a carer’s individual identities and their associated needs. The potential complexity of caring roles is therefore explored, with an emphasis on acknowledging the personal needs and identities of carers beyond their caring roles. This acknowledgment has implications for service delivery and policy development regarding carers and those for whom they care

Variations in HIV Prevention Coverage in Subpopulations of Australian Gay and Bisexual Men, 2017–2021: Implications for Reducing Inequities in the Combination Prevention Era

Using repeated behavioural surveillance data collected from gay and bisexual men (GBM) across Australia, we assessed trends in HIV prevention coverage (the level of ‘safe sex’ achieved in the population by the use of effective prevention methods, including condoms, pre-exposure prophylaxis [PrEP] and having an undetectable viral load). We stratified these trends by age, country of birth/recency of arrival, sexual identity, and the proportion of gay residents in the participant’s suburb. Among 25,865 participants with casual male partners, HIV prevention coverage increased from 69.8% in 2017 to 75.2% in 2021, lower than the UNAIDS target of 95%. Higher levels of coverage were achieved among older GBM (≥ 45 years), non-recently-arrived migrants, and in suburbs with ≥ 10% gay residents. The lowest levels of prevention coverage (and highest levels of HIV risk) were recorded among younger GBM (< 25 years) and bisexual and other-identified participants. Younger, recently-arrived, and bisexual GBM were the most likely to use condoms, while PrEP use was concentrated among gay men, 25–44-year-olds, and in suburbs with more gay residents. The use of undetectable viral load was most common among participants aged ≥ 45 years. Our analysis shows that high HIV prevention coverage can be achieved through a mixture of condom use, PrEP use, and undetectable viral load, or by emphasising PrEP use. In the Australian context, younger, bisexual and other-identified GBM should be prioritised for enhanced access to effective HIV prevention methods. We encourage other jurisdictions to assess the level of coverage achieved by combination prevention, and variations in uptake

Adjusting Behavioural Surveillance and Assessing Disparities in the Impact of COVID-19 on Gay and Bisexual Men’s HIV-Related Behaviour in Australia

COVID-19 has disrupted sexual behaviour and access to health systems. We adapted regular HIV behavioural surveillance of gay and bisexual men (GBM) in Australia in response to COVID-19, assessed the impact on the profile of the sample, the participants’ HIV-related behaviour, and whether COVID-19 may have accentuated existing disparities in the Australian HIV epidemic. Data collected from five states during July 2017–June 2021 were included (N = 31,460). The emphasis on online recruitment after COVID-19 led to smaller sample sizes, greater geographic reach, and a higher proportion of bisexual-identifying participants. Most participants (88.1%) reported physical distancing and 52.1% had fewer sex partners due to COVID-19. In the COVID-19-affected rounds (July 2020–June 2021), the number of male partners, recent HIV testing and pre-exposure prophylaxis (PrEP) use all fell, and HIV risk among the smaller group of participants who reported casual sex increased. COVID-related changes were generally more pronounced among GBM aged under 25 years, participants from suburbs with fewer gay residents, and bisexual men. These groups should be prioritised when encouraging GBM to reengage with HIV testing services and effective prevention methods, like condoms and PrEP

Changing Attitudes Towards Condoms Among Australian Gay and Bisexual Men in the PrEP Era: An Analysis of Repeated National Online Surveys 2011-2019

Condoms have been the primary form of HIV prevention for gay and bisexual men (GBM) for most of the HIV epidemic. The introduction of biomedical HIV prevention may have changed attitudes towards condoms. Data from repeated national online surveys of GBM in Australia were used to examine how attitudes towards condoms and confidence discussing condoms with partners changed in the period 2011-2019. The proportion of all participants who reported a positive experience in using condoms remained low and unchanged (9.6% in 2011 to 6.0% in 2019). Confidence in discussing condoms with partners decreased over time (from 72.2% in 2011 to 56.6% in 2019). Confidence in discussing condoms was associated with concern about sexually transmitted infections, and more consistent condom use. Sustaining confidence in using condoms may be more challenging as biomedical prevention methods become more commonly used

Explicit Relationship Agreements and HIV Pre-exposure Prophylaxis Use by Gay and Bisexual Men in Relationships

Relationship agreements are important for HIV prevention among gay and bisexual men (GBM) in relationships, with research earlier in the HIV epidemic often finding that agreements specified monogamy or condom use with casual partners. There is evidence that HIV pre-exposure prophylaxis (PrEP) has shifted sexual practices among some men in relationships, such as allowing condomless sex with casual partners, but there has been little attention paid to relationship agreements among GBM who use PrEP. In this paper, we analyzed national, Australian, cross-sectional data from an online survey completed by non-HIV-positive GBM in 2021 (N = 1,185). Using logistic regression, we identified demographic characteristics, sexual practices and the types of relationship agreement that were associated with PrEP use among GBM in relationships. Using Pearson’s chi-squared tests, we explored whether PrEP users in relationships reported similar sexual practices to PrEP users not in relationships. PrEP use among GBM in relationships was independently associated with older age, identifying as gay, being in a non-monogamous relationship, having a spoken (explicit) relationship agreement, having a primary HIV-negative partner taking PrEP or a primary partner living with HIV, reporting recent condomless casual sex, reporting an STI diagnosis in the past year, and knowing at least one other PrEP user. We found that PrEP users in relationships had similar sexual practices to PrEP users not in relationships. GBM in relationships who have casual sex and who meet PrEP suitability criteria may be good candidates for PrEP. Our findings suggest that explicit relationship agreements remain important for HIV prevention, and they support PrEP use among GBM in relationships

Responding to a national policy need : development of a stigma indicator for bloodborne viruses and sexually transmissible infections

In Australia, there are five strategies that set out a national response to HIV, viral hepatitis and sexually transmissible infections.1-5 Each strategy contains a set of objectives that work towards reducing the transmission, morbidity and mortality associated with these infections, with progress monitored via a set of related indicators. A clear objective exists within each of the five strategies to “eliminate the negative impact of stigma, discrimination, and legal and human rights issues on people's health”.1-5 However, until recently, there has been no indicator to measure stigma and monitor progress against these objectives. This commentary outlines an approach taken to develop a stigma indicator and lessons learned from its implementation in surveys of priority population groups

A universal precautions approach to reducing stigma in health care: getting beyond HIV-specific stigma.

BACKGROUND: Delivery of effective health care is hampered by stigma, the social processes that attach negative judgement and response to some attributes, conditions, practices and identities. Experiencing or anticipating stigma can lead to a range of practical impacts, including avoidance of health care. While we are concerned about the stigma that is attached to HIV, this commentary makes the argument that the health system is burdened by stigma of many origins. MAIN BODY: Reducing stigma is a key issue in improving quality of health care. Our focus on HIV is about providing better care in a non-judgemental, respectful and dignified manner which enhances the health and well-being of individuals as well as delivering benefit to society at large through better population health outcomes. However, the same could be said for the numerous possible attributes, conditions, practices and identities that attract stigma. It is unrealistic to expect health systems to respond to siloed appeals for change and action. A unifying logic is needed to propel concerns about stigma to the front of the queue for action by health systems. CONCLUSION: This commentary suggests the need for a universal precautions approach to stigma in health care, that focuses on recognising that all people may experience stigma and discrimination targeted at one or more aspects of their identities, attributes, practices and health conditions. Drawing on health system precepts of equity, access and quality of care, we argue that a universal precautions approach to reducing stigma of all origins can effect everyday aspects of policy, procedure and practice to improve outcomes for individuals and for population health

Knowledge of Australia’s My Health Record and factors associated with opting out:results from a national survey of the Australian general population and communities affected by HIV and sexually transmissible infections

My Health Record is Australia’s national, digital, personal health record system. All Australians have a record in the system unless they choose to opt out of it. Concerns about privacy, security and unwanted sharing of data, particularly in marginalised populations, may impede its use. We conducted a national, online survey of Australians’ attitudes to digital health in April-June 2020. The sample (N = 2,240) was recruited from the general population and four priority populations affected by HIV and other sexually transmissible infections: gay and bisexual men, people living with HIV, sex workers, and trans and gender diverse people. This analysis assesses factors associated with greater knowledge of My Health Record and the likelihood of opting out of the system. Due to increased concerns about data privacy and misuse, we hypothesised that priority population members would know more about and be more likely to opt out of the system. We found that most of the sample (71.2%) knew little about My Health Record and 29.4% had opted out of the system. Greater knowledge of My Health Record was associated with younger age, having a university degree, having one or more health conditions, and being trans or gender diverse. Being a student, unemployed, receiving government benefits, or having poor self-reported health, were associated with less knowledge. Opting out of My Health Record was associated with having a university degree, one or more health conditions, and being a priority population member. The likelihood of opting out was lower among people born overseas, residents of Queensland, and people who were students, unemployed, or receiving government benefits. We recommend additional investment in community-based education to address people’s concerns about My Health Record and support people to use the system without compromising their health care, privacy, or security. Opting out may be a legitimate choice for people who perceive more risks than benefits from the system