Burden in caregivers of long-term stroke survivors: Prevalence and determinants at 6 months and 5 years after stroke

Highlights

• We evaluate caregiver burden in caregivers of stroke patients.

• Severe burden declines from 44% to 36% within 5 years after stroke.

• Only carer-related factors predict the burden in early and chronic phases of stroke.

Abstract

Objectives

To assess the prevalence of considerable burden among caregivers of stroke survivors at 6 months (Time 1) and 5 years after stroke (Time 2), to analyse changes in burden severity over time and to identify factors associated with the burden.

Methods

Eighty eight patient/caregiver pairs were assessed. Caregiver burden was measured with the Caregiver Burden Scale. Socio-demographic, stroke-related and psychological characteristics were analysed as potential determinants of the burden. Exact multiple logistic regression was used to identify the predictive factors.

Results

Considerable burden was reported by 44% of the caregivers at Time 1 and 30% at Time 2. The burden was independently associated with caregivers’ sense of coherence and amount of time spent caregiving at Time 1, and with caregivers’ anxiety at Time 2.

Conclusions

A significant proportion of the caregivers experienced considerable burden in the post-acute and chronic phases of stroke, although this proportion declined over time. Several characteristics were associated with the increased burden at different time points. All the independent predictors related to aspects of the carers.

Practice implications

Programmes including education about coping strategies and time management, as well as respite care provision, could be beneficial and might help to reduce the burden of caregiving.

Introduction

The demographic ageing of societies and decreasing early stroke fatality rates have resulted in an approximately 84% increase in the absolute number of stroke survivors in the past few decades [1]. Nowadays, around 33 million stroke patients live worldwide and a sizable proportion of them suffer from moderate or severe disability [1]. According to recent studies, significant functional limitations are noted in 40–45% of the survivors in the first months after a stroke [2], [3] and in around 30% after 5 years [4], [5]. These patients need permanent or temporary care and assistance with self-care and activities related to independent living in the home and community [6]. Because the majority of patients return to their own home after discharge from hospital, the help required is most often provided by family members.

Providing care may be highly demanding, due to the complex nature of stroke sequalae including physical, emotional, cognitive and behavioural changes, little preparation for caregiving tasks resulting from the suddenness of the illness, shortened length of hospitalisation and insufficient post-discharge support [7], [8]. The caregivers may therefore experience adverse effects on their physical and emotional health, social activities, financial situation and spiritual functioning [9]. These consequences are termed “caregiver burden or strain” and are considered to be an important outcome of the caregiving process.

Many studies have shown that 25–46% of carers perceive a substantial burden during the first 6 months of caregiving [10], [11], [12], [13], [14] and that the average level of the burden is constant, or decreases slightly over this period [11], [14], [15]. The first few months of caregiving have been recognised in the literature as “taking up the role” [16], a time when caregivers try to gain control of the situation and attempt to understand their new role, rearrange their everyday life, seek information and support, recognise the patient's needs and learn the skills to meet them [17], [18], [19]. The severity of burden during this period is associated with both survivor and caregiver characteristics, among which greater post-stroke disability, disturbances of emotional health in both survivors and caregivers, as well as longer time spent in caring have been consistently found as determinants of the increased burden [20], [21]. Our reports, and those of others, have additionally shown the importance of coping abilities for dealing with caregiving demands [22], [23]. Qualitative studies have shown that a carer's experience may change over time, along with skills development, the establishment of new routines, incorporating care responsibilities into daily life and developing coping strategies [19], [24]. Therefore, one can posit that the burden may lessen with the passing of time. On the other hand, constant alertness, prolonged tiredness, a distorted social life and deprivation of personal needs may preserve, or even increase, the distress and burden [9], [25], [26].

So far, few studies have analysed changes in caregiver burden over time and, in the majority of them, the observation period did not exceed 12 months following the stroke or hospital discharge [20]. Only one study, that by Visser-Meily et al. [27], followed spouse caregivers for 3 years after stroke, examining their psychosocial functioning, including the burden. These authors found that the level of burden significantly declined over time. However, 43% of the caregivers still reported marked strain at the final examination.

Considering the fact that many stroke survivors require multi-year care, and that the adverse effects of caregiving may also be long-lasting, further prospective studies tracing the same patient/caregiver dyads seem to be important. Such studies would provide additional insight into the evolution of caregiving and would help to identify those individuals at risk of substantial burden.

The aims of the present study therefore were (1) to assess the prevalence of considerable burden among stroke survivors’ caregivers at 6 months and 5 years after stroke, (2) to analyse changes in burden severity over time, and (3) to identify factors associated with the burden at 6 months and 5 years following stroke, in order to know whether the burden and its determinants are similar or different at the post acute and chronic phases of stroke.