Carer quality of life and experiences of health services: a cross-sectional survey across three neurological conditions

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 [1‐4]. 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]. As informal caregivers play an important role in the care for LTNCs, it is important to consider their well-being and the support that health and social services can provide to help carers in the caregiving role. Quality of life of caregivers of someone with one of these three LTNCs is impaired [2, 4, 6‐8], and quality of life is poorer when the symptoms are more severe, the amount of time spent caring increases or if the patient is depressed [4, 5, 7, 9‐11].

Caring for someone with an LTNC can constitute a considerable burden. MND caregivers reported that the main burdens were ‘personal and social restrictions’ and ‘physical and emotional problems’ [12]. In MS carers the main health problems are anxiety, depression and tiredness [5] and a systematic review concluded that providing care in MS has a major impact on all areas of the caregiver’s life [13]. Family and friends spent 4.6 to 12 hours per day providing care to moderately and severely disabled MS patients [14]. 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 also report tasks involving physical effort to be the most difficult [18].

Due to the impact on caregivers, it is important that appropriate support is provided with the goal of minimising the impact on quality of life and reducing caregiver related burden. Although many complexities surround caregivers’ decisions to seek and accept support [19], perceived social support in MS has been shown to be beneficial to the caregiver [13]. Although this was not support specifically from health services, it is reasonable to assume that such support would benefit caregivers. Generally, little information is available on the impact of support of health and social care services on caregiver well-being. However, a study of people with a neurodegenerative condition (including MND, MS, PD and Huntington’s Disease) and their caregivers showed that those receiving more tailored health services and more palliative care services were more satisfied with their care [20]. Furthermore, MND caregivers’ satisfaction with formal services correlates with caregivers’ self-predicted ability to cope in the future [21]. This study aims to examine the relationship between quality of life in LTNC caregivers and support provided by health and social care services, with a particular focus on problems experienced with support from services.

A cross-sectional postal survey was conducted to gather information on people with a long-term neurological condition and their caregiver’s health status and experiences of health and social care services (October 2008 to January 2009). This article presents the findings on caregivers’ health status and experiences of services.

Ethical approval for the survey was obtained through the Central University Research Ethics Committee (University of Oxford).

The aim of this article was to examine the relationship between carer quality of life and strain and experiences of health and social care services. The findings show that quality of life is compromised compared with the general working age population and that carers in LTNC experience strain from their caregiving role. This is in line with previous findings [2, 4, 6‐8]. Furthermore, differences were found in quality of life and strain between the carers of the three different LTNCs. Significant differences were found in the number of carers reporting problems with health and social services (6 out of 12 items) between the three LTNCs. The most commonly reported problem, reported by 69.3% overall, was not to have had any or enough opportunity to discuss the amount of caring with a health or social profession. Overall, there was no clear trend for carers of one of the LTNCs to report a more problems with individual items and there was no significant difference in terms of the total problem score. However, in individuals with one of the LTNCs, a trend was found with usually individuals with MND reporting fewer problems [29]. This seems to indicate that the problems reported by carers are less driven by the disease than by the problems reported by the patients.

The total problem score was however significantly associated with the PCS, MCS and CSI score, indicating that carers who reported more problems with health and social services had worse quality of life and higher strain. Previous studies have reported factors that impact on quality of life, for example duration of illness and the amount of time spent caring [4, 7, 10, 11, 30]. Therefore the significant relationship between carer well-being and experiences of services as measured by the total problem score was examined by including demographic and caring variables as covariates. The significant relationship persisted when LTNC and a range of demographic and caregiving covariates were included in the analysis. The association was particularly strong for carer strain, and less strong (but still significant) for quality of life. This is not unexpected as quality of life was measured by a generic health status questionnaire and carer strain by a more specific instrument.

Some limitations of the study need to be acknowledged. Overall, although a larger sample was achieved in this survey in comparison with previous carer studies [5, 7, 18, 31], a carer responded for 37.4% of the patients contacted, and therefore caution is needed when interpreting the results. Taking this estimate as a response rate assumes that every patient has a caregiver, which is not necessarily the case, and investigating other means of recruiting caregivers may be important. Another limitation may be the recruitment through patient organisations, although there is no evidence to suggest that these carers are different from other carers. Finally, the results are based on a cross-sectional survey and therefore it is not possible to establish a causal link between quality of life and strain and the number of problems reported. However, the results do indicate that there is an association and therefore providing high quality support to carers of someone with a LTNC is important.

This study set out to investigate the relationship between carer well-being and experiences of health and social care services in three long-term neurological conditions. The findings suggest that a considerable number of carers experience problems with health and social care. The number of problems reported is associated with carer quality of life and strain, even when other influencing factors (demographics, caregiving variables) are corrected for. This stresses the importance of health and social services appropriately supporting carers, and thus helping to minimise the burden caused by caring for someone with a LTNC. It is increasingly recognised that carers of people with long-term conditions play a crucial role in complementing the support given by health and social services. However, carers have their own needs and it may be that those with greater needs have less access to services to help them.