Abstract
BackgroundNeurological conditions have a substantial impact on carers, with carer well-being having been shown to be influenced by a number of demographic, patient and caregiving factors. Support given to carers can lead to better coping. This study investigated the relationship between carer well-being and experiences with health and social services.MethodsA cross-sectional survey was conducted of 1910 (37.4%) of carers of 5109 people with motor neuron disease (MND) (n=434, 54.9%), multiple sclerosis (MS) (n=721, 30.7%) and Parkinson’s disease (PD) (n=755, 38.2%). Carers completed a generic health status measure (SF-12), a carer strain measure (Carer Strain Index- CSI) and a newly developed questionnaire on health and social care experiences. Data were analysed by analysis of variance with p set at <0.05.ResultsCarer well-being was found to be compromised and differed significantly between the three conditions. Furthermore, a considerable number of carers experienced problems with aspects of health and social care, although there was no clear pattern according to the condition that was cared for. The total number of problems reported did not differ significantly between conditions but was significantly (all p<0.001) associated with carer quality of life (both physical and mental health) and strain, even when other influencing factors (demographic and caregiving variables) were corrected for. The association was particularly strong for carer strain, and less strong (but still significant) for quality of life.ConclusionsThe results show that carer well-being is compromised, in line with previous studies. Furthermore, the link of carer well-being to the number of problems reported suggests that minimizing problems experienced could improve carer well-being. This stresses the importance of health and social services appropriately supporting carers.
Highlights
Neurological conditions have a substantial impact on carers, with carer well-being having been shown to be influenced by a number of demographic, patient and caregiving factors
This study aims to examine the relationship between quality of life in Long-term neurological conditions (LTNC) caregivers and support provided by health and social care services, with a particular focus on problems experienced with support from services
The Caregiver Strain Index (CSI) score was highest in Motor neuron disease (MND) carers, indicating that MND carers experience a higher strain from their caregiving role (p
Summary
Neurological conditions have a substantial impact on carers, with carer well-being having been shown to be influenced by a number of demographic, patient and caregiving factors. Motor neuron disease (MND), multiple sclerosis (MS) and Parkinson’s disease (PD) are three long-term neurological conditions (LTNCs) that affect the quality of life of people with these conditions [1,2,3,4] These LTNCs are progressive meaning that disability increases over time, with support from others, usually family members, being needed and tending to increase over time as symptoms become more severe [5]. In PD, caregivers have more severe depression and higher reports of tiredness, sadness and lower life satisfaction than healthy elderly people [15], and experience considerable burden in terms of health, depression and social life [5], psychological distress [16] and strain from their caregiving role [17]. PD caregivers report tasks involving physical effort to be the most difficult [18]
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