Perceived social support and health-related quality of life in older adults who have multiple chronic conditions and their caregivers: a dyadic analysis
Introduction
In recent decades, the prevalence of multiple chronic conditions (MCCs), defined as the coexistence of two or more chronic illnesses in an individual, has increased due to the ageing of the population and the global rise in life expectancy (Dattalo et al., 2017). In the USA, 68% of older people are affected by MCCs (Sambamoorthi et al., 2015), and in Europe about 49% have at least two chronic illnesses (Leadley et al., 2012). Compared to people affected by a single chronic condition, older people suffering from MCCs present greater disability, higher mortality, increased healthcare costs, poorer health-related quality of life (HRQOL) (Glynn et al., 2011; Pefoyo et al., 2015), and higher healthcare service utilization (Megari, 2013). MCCs also negatively influence the HRQOL and health conditions of people taking care of chronically ill individuals (Yang et al., 2012), called informal caregivers, who are usually family members and close friends. Informal caregivers' HRQOL can also influence their care recipients' health outcomes: poor caregivers’ HRQOL is associated with increases in the length of patient hospitalization (Vincent-Onabajo et al., 2013), number of re-hospitalizations (Luppa et al., 2010), and healthcare costs (Chau et al., 2014; Pucciarelli et al., 2017).
Chronically ill older people rely on their informal caregivers to receive help in their daily activities, and to manage their chronic conditions and their psychological distress (Bustamante et al., 2018; Gibson and Houser, 2007). In contrast, informal caregivers rely on their own social network to receive support in their caregiving duties and to maintain their emotional and physical health (Thomson et al., 2012). People who have MCCs and their caregivers, termed patient-caregiver dyads, can require more social support than individuals with a single chronic disease, due to the additive effect of the stressors and self-management requirements for each disease (Bugajski et al., 2019). Therefore, social support can play an important role in alleviating the impact of MCCs and improving health outcomes.
Social support is a multidimensional construct that has been described in terms of the support functions (i.e. instrumental, emotional, informational support) and the structure and composition of the social network (Helgeson, 2003). The structural component of support comprises the diverse sources of social support, such as family members, friends, and significant others (Nurullah, 2012). People who can be considered as significant others are dating partners, spouses, coworkers, neighbors, spiritual advisors, healthcare personnel, or peer groups, based on the person's age, marital and health status as well as on social and cultural conditions (Krokavcova et al., 2008).
Research conducted in patients with a single chronic condition has shown that perceived social support - the subjective perception of support received or available when needed - is a stronger predictor of health outcomes and well-being than received social support - the support actually accessible to or received by the individual (Helgeson, 2003). For example, higher perceived social support was associated with better physical HRQOL in chronic kidney disease patients (Ibrahim et al., 2015) and mental HRQOL in HIV-positive patients (McDowell and Serovich, 2007). Also, in older people, perceived social support was positively associated with the vitality component of physical HRQOL as measured by the Short Form (SF)-36 (Carrapatoso et al., 2017; Garcia et al., 2005), and with emotional well-being (Belanger et al., 2016; Li et al., 2014). Similarly, in patients’ caregivers, perceived social support was associated with increased quality of life (Brand et al., 2016; Helgeson, 1993).
Only a few studies have explored the influence of perceived social support on HRQOL in dyads of patients suffering from a single chronic illness and their caregivers, while taking into consideration the interdependence between the two members of the dyad (Kenny et al., 2006). For example, Thomson et al. (2012) found that low informational and emotional support perceived by patients with coronary artery disease had a negative association with their own and their caregivers' mental HRQOL. Similarly, Baumstarck et al. (2016) found that poor instrumental and emotional support among glioma patients affected their own and their caregivers' HRQOL negatively, while higher caregivers' social support was associated with better patient quality of life. Hamidou et al. (2018) found that greater instrumental and emotional support among the family caregivers of cancer patients positively influenced patients' mental HRQOL, while higher social support used by patients was negatively associated with their own mental HRQOL, and with caregivers’ physical HRQOL. Although these studies have demonstrated the influence of perceived social support on mental and physical HRQOL in cases of single chronic conditions, the direction of effects on the members of the dyads could not be identified with any degree of consistency. Moreover, no study has been conducted to date on dyads with multiple chronic conditions, and none on Italian patient-caregiver dyads.
Researchers have investigated the influence of different sources of social support (i.e., family, friends, significant others) on health outcomes in patients with chronic conditions. In people with multiple sclerosis, perceived support from family was associated with better social and emotional functioning, and support from friends with greater vitality and better mental health (Krokavcova et al., 2008). In diabetes patients, support received from family was associated with better health outcomes (Komar-Samardzija et al., 2012; Mayberry and Osborn, 2012). In Canadian older people, perceived support from partner and friends was associated with better HRQOL, whereas in older Latin Americans, perceived support from family, children and partner, but not from friends, predicted better HRQOL (Belanger et al., 2016). In Chinese older adults, support from a spouse, or from children when the spouse was unavailable, played an important role in buffering negative affect, while support from friends enhanced emotional wellbeing (Li et al., 2014). While research has demonstrated the positive effect of perceived support from family on health outcomes in cases of a single chronic condition, the effects of other sources of support are still inconsistent. No prior study has explored the influence of perceived social support from different sources of support on the HRQOL of older patient-caregiver dyads who have MCCs. It is important for clinicians first to identify the main sources of social support for chronically ill people, thus determining who are the main patient referents during the entire process of care; and then to identify who supports the informal caregivers in performing their caregiving role, to reduce their burden and consequently improve the care received by chronically ill patients.
The following aims and hypotheses were framed for our study.
Aim 1. To investigate the differences between patients' and caregivers’ physical and mental HRQOL, and between their respective perceptions of social support from different sources.
Hypothesis 1. We expected that patients would present worse physical and mental HRQOL than their caregivers (Ivziku et al., 2019; Hamidou et al., 2018; Thomson et al., 2012; Wan-Fei et al., 2017), and would perceive greater support from family than from friends and significant others, since the family are the main source of support for ill and older people (Wen et al., 2017; Zhang et al., 2013). In the absence of any previous studies conducted on caregivers in MCCs, we wanted to explore whether caregivers would perceive greater support from other sources of support, besides family.
Aim 2. To identify the association between patients' and caregivers' perception of social support from different sources and their own HRQOL (intra-personal effect) and their dyad partner's HRQOL (inter-personal effect).
Hypothesis 2. In previous research on dyads involving patients with a single chronic disease and caregiver, intrapersonal as well as interpersonal effects of social support on the physical and mental HRQOL were identified but the direction of such effects (positive or negative) was not consistent (Baumstarck et al., 2016; Hamidou et al., 2018; Thomson et al., 2012). Moreover, in those studies the influence of different sources of support on quality of life was not investigated; therefore, we could not advance any hypothesis and this aim was exploratory.
Section snippets
Participants and data collection
This study used a cross-sectional design. A convenience sample of patient-caregiver dyads was recruited in outpatient clinics (including cardiology, geriatric, pulmonology, diabetes, internal medicine, and chronic diseases clinics) from seven regions of Italy from March 2017 to July 2018. Data collectors screened patients and their caregivers during routine outpatient visits. For a dyad to be enrolled, the caregiver had to accompany the patient to the visit and be identified by the patient as
Results
No missing data were identified for the MSPSS, SF-12 MCS, or SF-12 PCS total scores. The raw scores for SF-12 items were not reported in 6.5% of patients and 5% of caregivers, as a few research assistants reported only the total score computed. Little's test was non-significant, suggesting no evidence of systematic missingness in the data (χ2(24) = 31.3; p = 0.145). Not all the items of the MSPSS were normally distributed, showing skewness and kurtosis indices greater than |1|.
Discussion
This study aimed to identify differences between older people with MCCs and their caregivers with regard to their mental and physical HRQOL, and perceived social support from different sources, and to determine the association of perceived social support from family, friends, and significant others with HRQOL in MCC patient-caregiver dyads.
Conclusion
Our study suggests the reciprocal influence of perceived family support on the physical and mental HRQOL of MCC patient-caregiver dyads. Therefore, healthcare professionals should consider these findings when planning interventions to support patients with MCCs. Healthcare professionals should develop a care plan focused on the patient-family member dyad that recognizes the influence of support provided by family caregivers on patient health outcomes.
Credit author statement
MADDALENA DE MARIA performed the acquisition and the analysis of data and wrote the manuscript. SEMIRA TAGLIABUE supervisioned the analysis of the data and contributed to the results interpretation. DAVIDE AUSILI contributed to the design and implementation of the study, supervised the project and revised the manuscript, provided critical feedback and helped the research's shape. ERCOLE VELLONE contributed to the design and implementation of the study, supervised the project and revised the
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