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Australia

Prenusinersen economic and health-related quality of life burden of spinal muscular atrophy

Objective: To quantify the economic and health-related quality of life (HRQoL) burden incurred by households with a child affected by spinal muscular atrophy (SMA). Methods: Hospital records, insurance claims, and detailed resource use questionnaires completed by caregivers were used to capture the direct and indirect costs to households of 40 children affected by SMA I, II, and III in Australia between 2016 and 2017. Prevalence costing methods were used and reported in 2017 US dollar (USD) purchasing power parity (PPP).

Wed, 02/01/2023 - 08:42

Responding to families with complex needs: a national survey of child and family health nurses

Aims: The aim of this study was to explore the extent to which Australian child and family health nurses work with families with complex needs and how their practice responds to the needs of these families. Background. Many families with young children face challenges to their parenting capacity, potentially placing their children at risk of poorer developmental outcomes. Nurses increasingly work with families with mental health problems, trauma histories and/or substance dependence.

Tue, 01/10/2023 - 15:45

Parents' experiences of the service pathway to an autism diagnosis for their child: What predicts an early diagnosis in Australia?

Background: The early identification and diagnosis of autism is critical to ensure access to appropriate early intervention and support. Few studies have examined the association between potentially modifiable characteristics of the service system and timelier diagnosis. Methods: An online survey was conducted to examine parental experiences of service pathways to an autism diagnosis for their child, and to identify child, family, and service level characteristics that predict the age and timeliness of diagnosis.

Tue, 01/03/2023 - 12:43

Strong Carers, Strong Communities: a cluster randomised controlled trial to improve wellbeing of family carers of older people in remote Aboriginal communities

Introduction: Unpaid carers have a crucial role in supporting older people with cognitive impairment and disability, but their own health and wellbeing are often impacted. There are limited data on how carer strain, depression and empowerment may be improved for carers.

Wed, 06/22/2022 - 18:39

“I’m Trying to Stop Things Before They Happen”: Carers’ Contributions to Patient Safety in Hospitals

Patient safety policies increasingly encourage carer (i.e., family or friends) involvement in reducing health care–associated harm in hospital. Despite this, carer involvement in patient safety in practice is not well understood—especially from the carers’ perspective. The purpose of this article is to understand how carers of adult patients perceived and experienced their patient safety contributions in hospital. Constructivist grounded theory informed the data collection and analysis of in-depth interviews with 32 carers who had patient safety concerns in Australian hospitals.

Mon, 10/14/2019 - 12:10

“Did I make the right decision?”: The difficult and unpredictable journey of being a surrogate decision maker for a person living with dementia

Many people living with dementia eventually lose the capacity to make their own decisions and will rely on another person – a surrogate decision maker – to make decisions on their behalf. It is important – especially with the increasing prevalence of dementia – that the role of surrogate decision maker is understood and supported. This qualitative study explored the experiences of 34 surrogate decision makers of persons living with dementia in Australia. Face-to-face and telephone interviews were conducted over six months in 2014.

Wed, 10/09/2019 - 09:42

Authenticity, ambivalence and recognition in caring at the end of life and beyond

Informal caring at the end of life is often a fraught experience that extends well beyond the death of the person receiving care. However, analyses of informal carers' experiences are frequently demarcated relative to death, for example in relation to anticipatory grief (pre-death) or grief in bereavement (post-death).

Mon, 09/30/2019 - 14:37

Employment disadvantage and associated factors for informal carers of adults with mental illness: are they like other disability carers?

Background Providing unpaid support to family and friends with disabling health conditions can limit a carer’s capacity to participate in employment. The emotional support needs and unpredictability of caring for people with mental illness may be particularly demanding. While previous research suggests variable employment rates across carers for different conditions, there are limited data on mental health carers specifically.

Fri, 09/20/2019 - 14:34

Carers of People with Mental Illness from Culturally and Linguistically Diverse Communities

Australia is a multicultural country and it is common for families from culturally and linguistically diverse (CALD) communities to care for their relatives with mental illness. However, there are limited Australian studies examining the experiences of informal carers of people with mental illness from CALD communities. A scoping review was conducted to search for peer-reviewed articles reporting the perception of carers regarding their caregiving experiences, wellbeing, and needs.

Fri, 09/20/2019 - 12:47

Reciprocity, Autonomy, and Vulnerability in Men's Experiences of Informal Cancer Care

Men are increasingly participating, and acknowledging their roles, as informal . Yet, there has been comparatively little exploration of their experiences therein, especially within the context of cancer care. Here, drawing on semi-structured qualitative interviews with 16 Australian male carers for a relative with cancer, and using constructivist grounded theory, we explore their experiences of informal caring.

Tue, 09/10/2019 - 15:50

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