Issues for Primary, Informal, Home-based Carers of People Living with AIDS

Central to the Australian national strategic response to HIV/AIDS is the need for training and support for volunteer carers of people with HIV/AIDS. However, the role of primary, informal, home-based carers of people with AIDS (PWA) is not clearly defined and the research about carers undertaken in Australia has not specifically looked at this group. The aim of the study described was to examine the experiences of primary, home-based carers of people with AIDS in order to inform policy and program development. Data were collected from 47 carers in New South Wales and Victoria between August and November, 1996. A short self-administered questionnaire collecting demographic information was followed by a longer questionnaire with mostly closed questions on preparation for caregiving, caregiving tasks, symptom management, service use, coping strategies, and impact of caregiving. Open-ended questions were about the provision of emotional support by the carer to the PWA, the carer's health and positive aspects of caregiving. Two key findings emerge from the content and thematic analyses. The first relates to the study respondents, who differ from the national profile of informal carers in two areas, gender and age. The second relates to the diverse nature of the caregiving experience, including the vast array of symptoms and diseases that an AIDS diagnosis can entail, the complexity of the relationship between the carer and care recipient and the experience of multiple caregiving. These findings highlight the difficulty in identifying simple, singular strategies for carer support and information.

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Home-based care for reducing morbidity and mortality in people infected with HIV/AIDS

10.1002/14651858.cd005417 ◽

2005 ◽

Cited By ~ 2

Author(s):

Taryn Young ◽

Andrew Boulle ◽

Karishma Busgeeth

Keyword(s):

Morbidity And Mortality ◽

Home Based ◽

Home Based Care ◽

Hiv Aids

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Public mental health service use by people with intellectual disability in New South Wales and its costs

The Medical Journal of Australia ◽

10.5694/mja2.51166 ◽

2021 ◽

Author(s):

Preeyaporn Srasuebkul ◽

Rachael Cvejic ◽

Theresa Heintze ◽

Simone Reppermund ◽

Julian N Trollor

Keyword(s):

Mental Health ◽

Intellectual Disability ◽

Mental Health Service ◽

Service Use ◽

New South ◽

Public Mental Health ◽

Mental Health Service Use ◽

Health Service Use ◽

Public Mental Health Service ◽

South Wales

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A qualitative study of home care client and caregiver experiences with a complex cardio-respiratory management model

BMC Geriatrics ◽

10.1186/s12877-021-02251-5 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Connie Schumacher ◽

Darly Dash ◽

Fabrice Mowbray ◽

Lindsay Klea ◽

Andrew Costa

Keyword(s):

Health Service ◽

Qualitative Study ◽

Home Care ◽

Therapeutic Relationship ◽

Service Use ◽

Management Model ◽

Health Service Use ◽

Self Management ◽

Home Based ◽

Respiratory Management

Abstract Background Home care clients are typically older and have some degree of medical, physical, cognitive or social conditions that require formal or informal support to promote healthy aging in the community. Home care clients contribute a significant proportion of health service use, including emergency department visits. The DIVERT-CARE trial introduced a cardio-respiratory management model to improve client motivation, symptoms and rates of unwarranted health service use. Our objective was to explore the perceptions and experiences of individuals who participated in the DIVERT-CARE self-management support and education intervention. Methods A qualitative study was nested within a pragmatic randomized control trial and conducted following a 15-week multi-component cardio-respiratory intervention. A phenomenological descriptive design was employed using thematic analysis. Post-intervention, clients and their caregivers were invited to participate in a semi-structured telephone interview. Interview questions were designed to elicit the experience with the intervention components. Results A total of 29 interviews were completed from June 2018 to March 2020 from participants in Ontario, Newfoundland, and British Columbia. Three themes were identified; self-care trajectory and burden of responsibility, learning and behaviour change, and feeling connected pre-emptively to care providers, the information and medical advice, and connection through the therapeutic relationship. Conclusions Home care clients experience unique challenges in managing cardio-respiratory related chronic disease. Home-based interventions fostered a therapeutic relationship of connectedness while equipping clients with necessary knowledge and skills. These results inform recommendations for community nursing, and home-based self-management supports for older community-residing individuals.

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People living with HIV/AIDS and the utilization of home-based care services

African Journal of Microbiology Research ◽

10.5897/ajmr11.103 ◽

2011 ◽

Vol 5 (20) ◽

pp. 3166-3174 ◽

Cited By ~ 1

Author(s):

O Oguntibeju O ◽

T Ndalambo K ◽

Mokgatle Nthabu M

Keyword(s):

People Living With Hiv ◽

Care Services ◽

Home Based ◽

Living With Hiv ◽

Home Based Care ◽

Hiv Aids

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A profile of Australian mental health carers, their caring role and service needs: results from the 2012 Survey of Disability, Ageing and Carers

Epidemiology and Psychiatric Sciences ◽

10.1017/s2045796018000446 ◽

2018 ◽

Vol 28 (6) ◽

pp. 670-681 ◽

Cited By ~ 5

Author(s):

S. Diminic ◽

E. Hielscher ◽

M. G. Harris ◽

Y. Y. Lee ◽

J. Kealton ◽

...

Keyword(s):

Mental Health ◽

Mental Illness ◽

Physical Health ◽

Emotional Support ◽

Service Use ◽

Adult Child ◽

Household Survey ◽

Care Recipient ◽

Service Needs ◽

Formal Service

AbstractAimsPlanning mental health carer services requires information about the number of carers, their characteristics, service use and unmet support needs. Available Australian estimates vary widely due to different definitions of mental illness and the types of carers included. This study aimed to provide a detailed profile of Australian mental health carers using a nationally representative household survey.MethodsThe number of mental health carers, characteristics of carers and their care recipients, caring hours and tasks provided, service use and unmet service needs were derived from the national 2012 Survey of Disability, Ageing and Carers. Co-resident carers of adults with a mental illness were compared with those caring for people with physical health and other cognitive/behavioural conditions (e.g., autism, intellectual disability, dementia) on measures of service use, service needs and aspects of their caring role.ResultsIn 2012, there were 225 421 co-resident carers of adults with mental illness in Australia, representing 1.0% of the population, and an estimated further 103 813 mental health carers not living with their care recipient. The majority of co-resident carers supported one person with mental illness, usually their partner or adult child. Mental health carers were more likely than physical health carers to provide emotional support (68.1%v.19.7% of carers) and less likely to assist with practical tasks (64.1%v.86.6%) and activities of daily living (31.9%v.48.9%). Of co-resident mental health carers, 22.5% or 50 828 people were confirmed primary carers – the person providing the most support to their care recipient. Many primary mental health carers (37.8%) provided more than 40 h of care per week. Only 23.8% of primary mental health carers received government income support for carers and only 34.4% received formal service assistance in their caring role, while 49.0% wanted more support. Significantly more primary mental health than primary physical health carers were dissatisfied with received services (20.0%v.3.2%), and 35.0% did not know what services were available to them.ConclusionsResults reveal a sizable number of mental health carers with unmet needs in the Australian community, particularly with respect to financial assistance and respite care, and that these carers are poorly informed about available supports. The prominence of emotional support and their greater dissatisfaction with services indicate a need to better tailor carer services. If implemented carefully, recent Australian reforms including the Carer Gateway and National Disability Insurance Scheme hold promise for improving mental health carer supports.

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Prevention of Hiv/Aids-Associated Opportunistic Infections Through Housing and Municipal Services

Open House International ◽

10.1108/ohi-04-2008-b0006 ◽

2008 ◽

Vol 33 (4) ◽

pp. 43-52

Author(s):

Richard Tomlinson

Keyword(s):

Hiv Prevention ◽

Opportunistic Infections ◽

Labour Force ◽

Hiv And Aids ◽

World Health ◽

Clinical Staging ◽

Municipal Services ◽

Home Based ◽

Home Based Care ◽

Hiv Aids

The background to this paper is the increasing interest in the relationship between housing and municipal services and HIV/AIDS. The purpose of this paper is to clarify what, precisely, one has in mind when thinking that housing and municipal services might prevent HIV infection and associated opportunistic infections. The focus is not on the socioeconomic dimensions but on the modes of transmission associated with specific opportunistic infections. That is, the paper first disputes the relevance of housing and services to HIV prevention, but then demonstrates that housing and municipal services are important for (a) the prevention of certain opportunistic infections to which people affected by HIV/AIDS are particularly vulnerable, and (b) for the provision of home-based care. In addition to the medical focus of the paper, there is attention to the empirical backdrop on the relation between housing, municipal services and HIV/AIDS, analysing survey findings regarding among whom and where HIV prevalence is highest, and projections regarding the extent of HIV infections and AIDS based on the World Health Organization clinical staging system. Using Johannesburg as a case study, it is demonstrated that the number of persons having AIDS is smaller than one might expect and also that the number is already declining, which has implications for the provision of home-based care. However, it is also shown that the number of households that lost one or several members is increasing rapidly. In this context, labour force surveys are employed to identify the impacts on specific categories of households. At this stage, a defining unknown is the scale, nature and location of these reconstituted households and what this means for housing policy. Finally, a feature of the research was the extent to which medical practitioners viewed housing as a quixotic sideline within the broader struggle for HIV prevention and the provision of treatment. In sum, the paper provides an argument for incorporating housing and municipal services into both HIV and AIDS prevention and treatment programmes.

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The association between HIV/AIDS and food insecurity at the US–Mexico border: Experiences of low-income patients in the Rio Grande Valley

International Journal of STD & AIDS ◽

10.1177/0956462420930601 ◽

2020 ◽

pp. 095646242093060

Author(s):

Jennifer Tabler ◽

Laryssa Mykyta ◽

Jason M Nagata

Keyword(s):

Food Insecurity ◽

Low Income ◽

Rio Grande Valley ◽

Rio Grande ◽

Neighborhood Environment ◽

Mexico Border ◽

Aids Diagnosis ◽

Living With Hiv ◽

Us Mexico Border ◽

Hiv Aids

US–Mexico border communities are uniquely vulnerable to human immunodeficiency virus (HIV) transmission given the economic and social challenges these communities face. We surveyed low-income, predominantly Latinx residents receiving sexually transmitted infection testing and/or HIV/acquired immune deficiency syndrome (AIDS) care in the lower Rio Grande Valley of southernmost Texas about their experiences of food insecurity. Participants aged 18 years and over took a self-administered survey available in English or Spanish in a clinic waiting room ( N = 251). Ordinary least squares regression results suggested that those with a prior HIV/AIDS diagnosis reported a response for food insecurity that was approximately 0.67 points higher than peers without a prior HIV/AIDS diagnosis (coefficient = 0.67; p < 0.05), even when adjusting for sociodemographic characteristics, social support, perceived discrimination, and neighborhood environment. Interaction results between age and HIV status indicated that younger individuals living with HIV/AIDS experienced uniquely higher food insecurity; those who reported a prior HIV/AIDS diagnosis experienced an additional reduction in food insecurity by approximately 0.06 points for each additional year of age (age × HIV/AIDS interaction coefficient = −0.06; p < 0.05). Community programs serving low-income populations should consider screening for and intervening on food insecurity, especially among young adults living with HIV/AIDS.

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Factors affecting the use of home-based services and out-of-home respite care services: A survey of family caregivers for older persons with dementia in Northern Norway

Dementia ◽

10.1177/1471301218804981 ◽

2018 ◽

Vol 19 (5) ◽

pp. 1712-1731 ◽

Cited By ~ 5

Author(s):

Jill-Marit Moholt ◽

Oddgeir Friborg ◽

Bodil H Blix ◽

Nils Henriksen

Keyword(s):

Family Caregivers ◽

Urban Areas ◽

Healthcare Services ◽

Respite Care ◽

Care Recipient ◽

Full Time ◽

Northern Norway ◽

Care Services ◽

Home Based ◽

The Family

BackgroundFamily caregivers contribute substantially to the care for older home-dwelling people with dementia, although community healthcare services tend to be underutilized. In this study, we aimed to explore the use and predictors of use of home-based and out-of-home respite care services available to older home-dwelling persons with dementia, as reported by the family caregivers.MethodA cross-sectional survey was administered to family caregivers ( n = 430) in Northern Norway during April to November 2016. The use of healthcare services was categorized into two types according to principal component analysis: home-based services and out-of-home respite care services ( R2= 44.1%). Predictors of service use were examined with bivariate correlation, multiple linear regression, and Poisson regression analyses.ResultsThe use of home-based services among persons with dementia was significantly higher for persons with advanced age, persons living in urban areas, persons living in an assisted living facility, persons living alone, and persons able to manage being alone for a short period of time. Among the family caregiver variables, higher age, status as a daughter, son, or other family member, higher educational level, and full-time employment also predicted greater use of home-based services. Same ethnicity was associated with use of fewer home-based services. The use of out-of-home respite care services was significantly higher among male persons with dementia and among those living in urban areas. In addition, fewer out-of-home respite care services were used by male caregivers or daughters of the care recipient, while the use was higher when the caregivers experienced more caregiving demands or had provided care for longer periods of time.ConclusionsThese results indicate areas that policymakers and healthcare providers should consider to identify families who underutilize healthcare services and to achieve a more equal and efficient allocation of services in accordance with families' needs.

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