Abstract

Australia has one of the world’s highest life expectancy rates, and there is a rapidly growing need for informal caregivers to support individuals who are ageing, have chronic illness or a lifelong disability. These informal carers themselves face numerous physical and psychological stressors in attempting to balance the provision of care with their personal life, their work commitments and family responsibilities. However, little is known about the specific challenges facing rural carers and the barriers that limit their capacity to provide ongoing support. A cross-sectional survey composed of open-ended responses and demographic/socioeconomic measures used routinely by the Australian Bureau of Statistics (ABS) and the Australian Institute of Health & Welfare (AIHW) was used with a cohort of 225 rurally-based carers within New South Wales, Australia. Demographic questions specified the respondents’ age, gender, employment, caregiving status, condition of and relationship to the care recipient, postcode, residency status, and distance and frequency travelled to provide care. Open-ended comments sections were provided to allow participants to describe any issues and problems associated with caregiving including employment, travel, residency, carer support groups and any other general information. The results show that most rural carers were middle-aged women supporting a spouse or a child. Unpredictability associated with providing care exacerbated demands on carers’ time, with many reporting significant employment consequences associated with inflexibility and limited job options in rural locations. Specific issues associated with travel requirements to assist with care were reported, as were the impacts of care provision on the respondents’ own personal health. The majority of carers were aware of the social supports available in their local rural community, but did not access them, leaving the carers vulnerable to marginalisation. Problems associated with employment were noted as resulting in financial pressures and associated personal stress and anxiety for the caregivers. While this issue is not necessarily limited to rural areas, it would appear that the lack of opportunity and flexibility evident in rural areas would exacerbate this problem for non-metropolitan residents. The participants also identified specific barriers to the provision of care in rural areas, including the significant impact of travel. Access to support services, such as carer groups, were rarely accessed due to a mix of factors including inaccessibility, poor timing and a lack of anonymity. Financially, there was considerable evidence of hardship, and there is an urgent need for a comprehensive review of government and community-based support to better meet the needs of rural carers.

Highlights

  • IntroductionOngoing changes in family structure, such as the emergence of smaller and geographically diverse household units [5], limit the number of potential individuals to share family caregiving responsibilities

  • Using a purpose-developed survey tool, this study explores how the provision of care in rural settings may influence employment and social support opportunities, as these two factors can be more acute given the lack of opportunities in rural regions compared to metropolitan areas of Australia

  • A postcode check indicated that 17 respondents from major New South Wales (NSW) cities had completed the online survey

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Summary

Introduction

Ongoing changes in family structure, such as the emergence of smaller and geographically diverse household units [5], limit the number of potential individuals to share family caregiving responsibilities. This has led to instances where the carer role has to be solely performed by a spouse or parent who may be experiencing their own employment, health or ageing-related issues. This problem further compounds the challenging circumstances facing the individual, their carer and other family members [6,7,8]. Given in many instances there is a sole carer, family caregiving responsibilities can adversely affect capacity for employment and can result in premature retirement from work [9]

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