Quality of Life and Social Isolation Among Caregivers of Adults with Schizophrenia: Policy and Outcomes

Abstract

Services have been increasingly directed at supporting carers of people living with mental illness but it is difficult to evaluate the impact of service change where benchmarks for carer functioning are sparse. Sixty Australian carers were assessed regarding their quality of life, psychological distress, social isolation and caregiving experience. Their scores were compared with two matched community samples and previous studies. Carers were ten times more likely to be socially isolated and quality of life was significantly less than matched community samples. Over 40 % of the carer sample met criteria for probable psychiatric disorder. Comparison of caregiving experiences with a study 15 years ago showed no improvement in negative caregiving experiences. Carers still face considerable challenges to their wellbeing as they support people living with mental illness, in spite of progress in the development of policy and services.

Understanding the needs of carers of people with psychosis in primary care

“…Recently published evidence indicates they are up to 10 times more isolated than non-carers but are also significantly more socially isolated than carers of people with other health conditions. [6][7][8] Poor levels of physical health, including sleep difficulties,…”

Modifying illness beliefs in recent onset psychosis carers: Evaluating the impact of a cognitively focused brief group intervention in a routine service

“…Psychosis in a family member can be associated with high levels of stigma and shame (McCann, Lubman, & Clark, ; Wasserman, de Mamani, & Suro, ) and feelings of desperation (Allard, Lancaster, Clayton, Amos, & Birchwood, ). Social isolation in carers is high with recent evidence suggesting they were 10 times more isolated than non‐carers (Hayes, Hawthorne, Farhall, O'Hanlon, & Harvey, ). The caregiving role is commonly linked to high levels of burden, stress and distress (Lavis et al, ) which is significantly higher in early psychosis populations (Addington, Coldham, Jones, Ko, & Addington, ; Boydell et al, ) and can persist over the illness course (Brown & Birtwistle, ; Poon, Harvey, Mackinnon, & Joubert, ).…”

Perceived needs of carers of people with psychosis: An Australian longitudinal population-based study of caregivers of people with psychotic disorders

“…The types of support include: needing information regarding illness, services and management of the illness, support to improve relationships between carers and those for whom they care, and emotional support to talk about their experiences (Cleary, Freeman, Hunt, & Walter, ; Coker, Williams, Hayes, Hamann, & Harvey, ). In addition, caregivers typically experience social isolation, poor psychological health and diminished quality of life (Awad & Voruganti, ; Hayes, Hawthorne, Farhall, O'Hanlon, & Harvey, ). Studies have indicated that higher levels of perceived unmet needs had a negative effect on carers’ quality of life and extent of care‐giving impact (Cleary, Hunt, Walter, & Freeman, ; Zahid & Ohaeri, ).…”