Transitioning into spousal caregiving: contribution of caregiving intensity and caregivers’ multiple chronic conditions to functional health Free

Abstract

Background

both caregiving intensity and caregivers’ multiple chronic conditions (MCCs) are important aspects of caregiving that might affect the health and well-being of older spousal caregivers, but few investigations have simultaneously modelled their impact during the transition into spousal caregiving.

Objective

to examine the differential effects of caregiving intensity and caregivers’ MCCs on functional health over time among individuals entering the spousal caregiver role.

Methods

a total of 1,866 non-caregivers at the baseline were followed over a 4-year period (2011–2015). The effects of transitioning into caregiving (transitioned into low-intensity and transitioned into high-intensity versus never-caregiver) and caregivers’ MCCs (reported before and during the transitioning period versus no MCCs) on functional health at the follow-up were estimated using mixed-effects regression models.

Results

transitioning into spousal caregiving was associated with a decline in functional health, particularly for those transitioned into high-intensity caregiving, and for those who reported MCCs when transitioning into the caregiver role. The association between transitioning into spousal caregiving and functional decline was strongest for high-intensity caregivers reporting MCCs when transitioning into caregiving, followed by low-intensity caregivers reporting MCCs when transitioning into caregiving.

Conclusion

the results highlight the contribution of transitioning into high-intensity caregiving and caregivers’ MCCs to the functional health decline of spousal caregivers. Caregiver support interventions should target spousal caregivers who have newly entered a demanding caregiving role; clinical attention should be emphasised for the development of caregivers’ own MCCs coinciding with the transitioning period.

Introduction

The rising prevalence of older people living with disabilities has led to a sharp increase in demand for informal care [1]. This is especially true in China, where the provision of formal care has been seriously inadequate [2]. Over 60% of disabled older people in China are dependent on informal helpers for assistance [3], and 55% of the assistance is solely provided by their spouses [4]. Typically, spousal caregiving is considered a chronic stressor, as spousal caregivers consistently reported more adverse health outcomes than non-caregivers [5]. Although this evidence has largely been based on cross-sectional comparisons between caregiving and non-caregiving spouses, there is a growing appreciation of the dynamic nature of spousal caregiving, a progression in which care demands may fluctuate over time, and individuals adapt differently to care-related challenges when they transition into, engage with, and transition out of the caregiving role [6–8]. Consequently, the effects of caregiving on health are not static [9].

Despite the mushrooming number of studies of transitions in spousal caregiving, the majority used samples of spouses who had already become caregivers before the studies [10], many of which focused on the cessation of caregiving [11–13]. Only a limited number of studies on the impact of transitioning into caregiving have evidenced adverse mental health outcomes [10, 14, 15] and poorer self-rated health [16] of spouses who became caregivers. These studies, however, have not fully considered the heterogeneity of the spousal caregivers being affected during the transition into caregiving. For example, we know little about whether the effect of entering caregiving may differ between caregivers with different levels of caregiving intensity (e.g. high-intensity caregiving involves care for activities of daily living (ADL) while low-intensity does not) [17]. Although there is some evidence that moving into high-intensity spousal caregiving may lead to worse psychological health [14, 15], the role of caregiving intensity in conditioning the effect of the entry into spousal caregiving on functional health over time (e.g. decline in mobility performance) remains unexamined. Filling this knowledge gap is important because functioning decline may impede individuals’ ability to provide care for their spouses, which would increase the burden on the long-term care systems by creating more premature institutionalisations and greater demand for formal care resources [18].

Caregiver’s own health is another important aspect that may lead to heterogeneity in the health outcomes of spousal caregivers [19]. Spousal caregivers have been regarded as ‘hidden patients’, as many of them need to manage their own health problems when providing care [20]. Previous studies have linked caregivers’ poorer self-rated health at the baseline with more caregiving difficulties, but few have included caregivers’ multiple chronic conditions (MCCs) in their assessment [21], and even fewer have considered the role that chronic conditions played in affecting functional health of caregivers who have transitioned into spousal caregiving. Having multiple conditions may be physically challenging for caregivers during the transition, as they may divert their time, attention, and resources away from adequately caring for their own health [22, 23], or engage in physical exertion that could potentially complicate their daily health management [24] and exacerbate their health problems over time [18].

Given the importance of caregiving intensity and caregivers’ MCCs in shaping heterogeneous caregiving experiences, a simultaneous modelling of their impact during the transition into caregiving will enhance our knowledge of this formative period [14, 15]. The present study aimed to examine the differential effects of caregiving intensity and the caregivers’ ultiple chronic conditions on functional health over time for caregivers entering the spousal caregiver role. We hypothesised the following:

• Transitioning into spousal caregiving is associated with the functional decline of the caregivers, and this association is stronger for caregivers who transitioned into high-intensity caregiving than for those who transitioned into low-intensity caregiving.

• The association between transitioning into spousal caregiving and functional decline is stronger for caregivers who reported MCCs before or during the transition into caregiving role, compared to those caregivers without MCCs.

Methods

Data and sampling

The data came from three waves (2011, 2013 and 2015) of the China Health and Retirement Longitudinal Study (CHARLS), a nationally representative panel study of households with members aged 45 and over. The original baseline CHARLS sample included 17,708 participants, among whom we focused on 3,722 individuals from 1,861 marital couples who met the following criteria: (1) aged 60 and over in 2011 and completed all three wave interviews; (2) reported no psychiatric or memory-related diseases; (3) no missing data at each wave on questions about difficulty in ADL or instrumental activities of daily living (IADL), and receipt of ADL/IADL assistance. Following previous research [25, 26], the individuals were coded as spousal caregivers at each wave if they did not receive any ADL/IADL help and provided at least one type of ADL/IADL help for spouses (reported by their spouses). Of the 3,722 individuals, 2,212 individuals who never received any spousal care were identified as potential caregivers (1,510 individuals reported the receipt of ADL/IADL help for at least one observation) and were categorised according to their time-varying caregiving status during the 4-year period, as Never-Caregivers (n = 1,307), New Caregivers who did not provide care at the baseline but did so at the follow-up (n = 595), Continuing Caregivers who provided care at both the baseline and the follow-up (n = 261), and Stopped Caregivers who provided care at the baseline but not at follow-up (n = 85). Our final sample included 1,307 Never-Caregivers and 595 New Caregivers.

Measures

Functional health

At the baseline and the follow-up, the participants were asked to report the extent to which they had difficulty in performing a list of seven tasks (example items include extending arms above shoulder level, lifting or carrying weights over 5 kg). The possible responses to each item ranged from 0 ‘without any difficulty’ to 3 ‘cannot do it’. The summed scale score ranged from 0 to 21, with higher scores indicating poorer functional health (the Cronbach’s alpha for own disability was 0.83).

Caregiving intensity transition groups

At each wave, caregiving intensity was categorised into three levels: ‘no caregiving’ (no help given), ‘low-intensity’ (provided help for at least one IADL but not for ADL) and ‘high-intensity’ (provided help for at least one ADL). Based on the categorisation of caregiving intensity at the baseline and the two follow-up interviews, we classified the participants into one of the three caregiving intensity transition groups: (1) never-caregivers who remained in this state during the 4-year period; (2) new low-intensity caregivers who transitioned from non-caregiving at the baseline to providing low-intensity care, and this was the maximum of the intensity level they reported at either of the two follow-up interviews and (3) new high-intensity caregivers if they transitioned from non-caregiving at the baseline into the provision of high-intensity care at either of the two follow-up interviews. This classification of time-varying caregiving intensity has been previously used to predict changes in caregivers’ health outcomes [16].

Caregivers’ MCCs

At each wave, the participants reported whether they had been diagnosed with the following conditions: hypertension, dyslipidemia, diabetes, cancer or malignant tumour, chronic lung diseases, liver disease, cardiac disease, stroke, kidney disease, stomach or other digestive disease, arthritis or rheumatism, and asthma. Following the most commonly used approach [24], we identified the participants with two or more conditions reported and the participants reported less than two conditions. Combining such information at each wave, we categorised the participants into three groups: 1 = ‘no multiple chronic conditions’ (no or one condition reported); 2 = ‘pre-existing multiple chronic conditions’ (two or more conditions reported before the baseline); 3 = ‘emerging multiple chronic conditions’ (no or one condition reported at the baseline, but two or more conditions reported at the follow-up interviews).

Covariates

The following variable were selected as covariates because they have been related to study outcome [18, 21]: age, gender, education, pension status, self-rated financial status, co-residence, the presence of other family caregivers, baseline self-rated health, depressive symptoms that were measured using the 10-item form from the Center for Epidemiological Studies-Depression (CES-D), and baseline functional health.

Analytic strategy

Descriptive statistics were used to compare the differences in baseline characteristics and functional health (baseline and follow-up) across caregiving intensity groups (an analysis of variance was used for normally distributed continuous variables, and the chi-square test was used for categorical variables). The effects of transitioning into caregiving and caregivers’ MCCs on functional health at the follow-up were estimated using mixed-effects regression models to account for clustering at the individual level (Model 1). The interaction terms between the caregiving transition groups and the caregiver’s reported MCCs were examined to see if the effect of transitioning into caregiving on functional health varies according to the existence of MCCs before and after the baseline (Model 2).

Results

Sample characteristics

Table 1 presents the baseline characteristics and functional health at the baseline and the follow-up of the overall sample and according to caregiving transition group. The differences between the transition groups in gender, age, education, self-rated financial status and CES-D score were significant, as well as the differences in their scores of functional health at the baseline and the follow-up.

Table 2 listed the caregivers’ chronic conditions at the baseline and the follow-up. Arthritis or rheumatism and hypertension were the two most common conditions across the groups.

Transitioning into caregiving, caregivers’ multiple chronic conditions and functional health

Table 3 shows the estimates of the effects of transitioning into caregiving and caregivers’ MCCs on functional health at the follow-up. Relative to those who remained as non-caregivers, caregivers who transitioned into high-intensity caregiving reported the greatest decline in functional health, followed by caregivers who transitioned into low-intensity caregiving (supporting Hypothesis 1). In the overall sample, the existence of MCCs was associated with poorer functional health at the follow-up. Being older, female, not receiving a pension, self-rating financial status as less adequate, reporting higher level of baseline depressive symptoms and functional limitations were associated with poorer functional health at the follow-up (Model 1).

In Model 2, the interaction terms between the caregiving intensity transition groups and the caregivers’ MCCs were added to test for Hypothesis 2. The group of new high-intensity caregivers who reported MCCs during their transition into caregiving showed the most severe decline in functional health (B = 2.84, P = 0.000), followed by the group of new low-intensity caregivers who reported MCCs during their transition into caregiving (B = 0.97, P = 0.020), in comparison with new caregivers who reported no MCCs. No significant difference was observed for the caregiving transition groups with pre-existing MCCs before the onset of caregiving.

Discussion

Transitioning into spousal caregiving was associated with functional decline over time, which was particularly pronounced for caregivers who transitioned into high-intensity caregiving, and for caregivers who reported emerging MCCs when transitioning into the caregiver role. Consistent with the dynamic perspective of the caregiving progression, our findings underscored the importance of caregiving intensity and the caregivers’ MCCs in conditioning the effects of transitioning into caregiving. Our findings have implications for directing caregiver support services to older people who have newly entered a demanding caregiving role, and for planning health services for caregivers with their own MCCs that must be managed.

Caregivers who entered the role of spousal caregiving, especially those who started the high-intensity caregiving, experienced a greater decline of functional health than non-caregivers. This is consistent with the caregiving stress model [6, 16, 27], and the evidence that moving into an demanding caregiving role might lead to greater psychological distress [14, 15]. Since our definition of caregiving intensity was based on the care recipient’s ADL/IADL disability, this finding also highlights the interdependence of care-recipients and caregivers’ functioning as an important area needing further attention [28, 29]. Future studies with longer-duration data can assess the functional health trajectories of both the care-recipients and spousal caregivers. Regarding the possible challenges surrounding the onset of caring for an impaired spouse, community-based respite and day-care services should be offered for caregivers who are newly entering this role to release them from the around-the-clock care provision [8, 16, 30].

Caregiving intensity may interact with MCCs to predict worse functional outcomes when transitioning into caregiving. Specifically, we examined three categories of caregivers’ MCCs (no multiple conditions, pre-existing multiple conditions and emerging multiple conditions) to clarify the impact of caregivers’ MCCs that precede, versus those that coincide with the transition into the spousal caregiving role. Our results suggest that both the transitions into low- and high-intensity caregiving were damaging for spousal caregivers who reported MCCs coinciding with the transition period, while somewhat unexpectedly, the association between these transition groups and the functional decline was not present for caregivers with multiple conditions reported before the transition. Caregivers with long-existing MCCs before the onset of caregiving may have accumulated experience with their own conditions [20], have a better understanding of their partners’ care needs, and have increased resilience to caregiving difficulties. These accumulated advantages may have protected them from negative health outcomes resulting from the transition into caregiving [21]. Future research with more comprehensive data (e.g. health management, personal growth) will provide insights into how the dynamic interplay of the caregivers’ MCCs and the progression of caregiving unfolds to affect caregivers’ health over time.

This study has several limitations. First, as we did not have data on the reasons that led non-caregivers to become caregivers or to remain non-caregivers, and the exact time the care transitions occurred, we may have not adjusted for some potential confounders. Second, the CHARLS assessed chronic conditions using self-reports, which may be subject to a set of biases. As we followed the most commonly used approach to define the existence of MCCs (two or more conditions reported) [24], several other aspects of caregivers’ MCCs that are relevant to caregiving outcomes might have not been captured. For example, future studies are warranted to identify whether certain types of chronic conditions (e.g. arthritis, stroke) or their combinations might contribute more to the functional decline than others (e.g. digestive disease). Third, our longitudinal sample only included participants who completed all three waves, there might be possible selection bias associated with the attrition over the study. Participants in our sample were more likely to be physically and mentally healthier than those being excluded, thus more capable caregivers might have been oversampled.

Conclusion

Our study evidenced adverse functional outcomes among spousal caregivers during the transition into caregiving, highlighting an important fact that caregiving intensity and MCCs emerged when transitioning into the caregiving role may interact to affect the caregivers’ functional health over time. Considering that the functional decline experienced may impede the caregivers’ ability to provide care in the long-term, health and caregiver support interventions should be provided for caregivers who are newly entering a high-intensity caregiving role, especially for those caregivers who developed MCCs when entering the high-intensity caregiving role.

Conflict of interest

None.

Funding

This research was partially supported by the Seed Fund for Translational and Applied Research Project at the University of Hong Kong (project code: 201611160014).

References