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Aoun, Samar M.

Traumatised, angry, abandoned but some empowered: a national survey of experiences of family caregivers bereaved by motor neurone disease

Background: There are few illnesses as disruptive as motor neurone disease, a fatal neurodegenerative condition, where diagnosis introduces a clinical narrative of inevitable decline through progressive immobilisation into death. Recent evidence suggests that bereaved motor neurone disease family caregivers are more likely to be at moderate or high risk of complicated grief.

Fri, 07/08/2022 - 19:02

Grief, depression, and anxiety in bereaved caregivers of people with motor neurone disease: a population-based national study

Despite the traumatic and fatal nature of motor neurone disease (MND) and the caring experiences being described as unrelenting, little is known about risk of psychiatric morbidity and Prolonged Grief Disorder (PGD) for family caregivers. Methods: A cross-sectional survey of caregivers bereaved in 2016-2018 was distributed by the five MND Associations in Australia (2019). Validated tools for PGD (PG-13), anxiety, depression, and family functioning were included. Multinomial logistic regression was used to compare the factors associated with grief.

Mon, 03/29/2021 - 15:49

Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study

Background: Determining the effect of caregiving and bereavement remains a challenge.

Thu, 01/23/2020 - 10:16

Caregivers’ experiences of a home support program after the hospital discharge of an older family member: a qualitative analysis

The ageing global population has seen increasing numbers of older people living with chronic health problems, declining function, and frailty. As older people seek to live out their years at home, family members, friends and neighbours (informal caregivers) are increasingly relied upon for support. Moreover, pressured health systems and shorter hospital length of stay mean that informal caregivers can find themselves supporting the older person who is still unwell after discharge.

Sun, 05/05/2019 - 20:23

Australian family carer responses when a loved one receives a diagnosis of Motor Neurone Disease—“Our life has changed forever”

While the experiences of family members supporting a person with a terminal illness are well documented, less is known about the needs of carers of people with neurological diseases, in particular, Motor Neurone Disease (MND). This paper describes the qualitative data from a large Australian survey of family carers of people with MND, to ascertain their experiences of receiving the diagnosis. The aim of the study was to describe the experiences of family carers of people with MND in receiving the diagnosis in order to inform and improve ways in which the diagnosis is communicated.

Fri, 11/16/2018 - 10:49

Family Caregivers' Preparations for Death: A Qualitative Analysis

Context: Many family caregivers are not prepared for the death of their family member or friend. Palliative care services tend to emphasize the patients' preparation for death rather than caregivers' preparation for, or living after, death. Caregivers' perspectives on anticipating and preparing for death are under-researched, despite preparation being associated with better bereavement outcomes. Objectives: The objective was to explore family caregivers' preparations for death.

Mon, 09/10/2018 - 10:33

A person‐centred approach to family carer needs assessment and support in dementia community care in Western Australia

This feasibility study aimed to identify and address the support needs of family carers (FCs) of people living with dementia and to assess whether the use of the Carer Support Needs Assessment Tool (CSNAT) intervention in home‐based care was acceptable and relevant to FCs. The CSNAT intervention comprised two FC support needs assessment visits, 7 weeks apart, plus associated actions addressing prioritised needs by the Client Care Advisors of a community care service in Western Australia in 2015.

Fri, 08/24/2018 - 12:51

Family carers' experiences of receiving the news of a diagnosis of Motor Neurone Disease: A national survey

Family carers have a central role in the care and support of people with MND and face the challenges of the disease from diagnosis to progression and the multiple losses of MND, but their support needs are often neglected. This study aimed to investigate the experiences of family carers at the time of diagnosis and their satisfaction with receiving the news. An anonymous postal survey was facilitated by all MND Associations in Australia (2014) and 190 family carers completed the questionnaire. The questions centred on the SPIKES protocol for communicating bad news.

Fri, 08/24/2018 - 12:45

The Impact of Supporting Family Caregivers Before Bereavement on Outcomes After Bereavement: Adequacy of End-of-Life Support and Achievement of Preferred Place of Death

Context: The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention. Objectives: This study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT) intervention during the caregiving period has affected bereaved family caregivers' perceptions of adequacy of support, their grief and well-being, and achievement of their preferred place of death. Method: All family caregivers who participated in a stepped-wedge cl

Mon, 06/11/2018 - 15:15