1. Introduction
Unpaid care for older, dependent persons, and informal care for family members, friends, etc., has become a central issue in countries in the latest stage of epidemiological transition. Long life expectancy and low mortality rates have resulted in an increased incidence of complex chronic diseases and disabilities that affect almost all elderly people and their families. Around 13% of people aged >50 years require informal care in OECD countries [
1]. In the EU-28 group, 47.9% of elderly people reported having moderate or severe difficulties with personal care and household activities [
2]. In countries with a welfare state relying on the family structure, such as Spain or Italy, informal care has become part of daily life in many families [
3].
The concerns of informal caregivers (ICs) have been reported from many points of view, from sociological issues [
4], national regulation, and stakeholders’ views [
5], to caring activities to avoid the negative effect of losing control due to informal care, and the so-called caregiver burden [
6,
7]. The factors associated with the caregiver’s burden have been widely studied: sex, age, socioeconomic status, educational level, ethnicity, social support, household organization, and time spent caring have been described as triggers of the caregiver burden [
7,
8,
9].
ICs’ health and conditions based on the care-receiver disease (e.g., dementia or terminal cancer) or grouped by situation have been studied, with some studies trying to extend the conclusions to all ICs [
10,
11,
12,
13]. Studies in the general population have reported this selection bias [
8,
14]. However, survey designs had other problems, such as the specificity of items and lack of consistency of the answers. Another setting to access ICs is primary healthcare (PHC) because it is the gatekeeper of the healthcare system [
15,
16,
17,
18]. Most people visit a PHC center when they require any healthcare service and they allow access to all kinds of ICs that are not restricted by disease.
PHC was envisioned in the Declaration of Alma-Ata as the “first level of contact of individuals, the family and community with the national health system, bringing healthcare as close as possible to where people live and work” [
19,
20]. In countries with a well-established system, PHC is accessible in centers in the community (districts, villages, and towns) where citizens have an assigned family physician and a PHC nurse. Care provision in PHC is longitudinal and cares for the most prevalent diseases, conditions, and health problems [
21]. PHC health professionals coordinate with other healthcare professionals, groups, and settings (i.e., hospital or disease-oriented healthcare services). While PHC professionals have a close knowledge of patients, they are uniquely positioned to identify ICs, assess their needs, and monitor their overall health and wellbeing [
22,
23]. In Spain, PHC centers have home-care programs, where PHC professionals periodically visit patients who, due to health or disability, cannot reach a PHC center. The PHC home program includes palliative care, psychogeriatric home care, and a diversity of clinical conditions [
22,
24]. PHC professionals attend to patients’ clinical needs, and in most cases, ICs help to understand the care receiver’s situation, thus enabling patient- and family-centered decisions [
22].
Studies describing the characteristics of ICs and associated factors include samples of participants not representing the general characteristics of ICs, or assessments limited to an area of their health. Most papers focus on care-receiver disease or ICs’ social and psychological traits and have not examined clinical characteristics (e.g., comorbidity) that might alter ICs’ wellbeing. Therefore, having an integrated assessment of the characteristics of ICs is crucial to plan ICs support, improve ICs care, and establish priorities for their situation independently of the disease and status of the care receiver. This study aimed to assess ICs’ demographic characteristics, health status, risk factors, PHC consultations and services, and the dependency of care receivers in the PHC home-care program. Secondarily we evaluated variables and factors associated with health-related quality of life and the caregiver’s burden.
4. Discussion
In this study, we examined all factors that might alter the health status and wellbeing of ICs’ including care-receiver characteristics. The integrated evaluation provided new insight into ICs’ health perspective. Our results show ICs had high comorbidity and health-related risk factors, including mental health issues and chronic conditions. Care receivers had moderate to severe dependency and low cognitive and motor functions. Most ICs had social support, and their quality of life and burden were associated with their physical characteristics.
Sociodemographic characteristics of ICs and care receivers reflected the aging of the population. ICs were predominantly retired and married females, with high school education. Care receivers were mostly elderly mothers with severe dependence and needed moderate to maximum care. Caring was shared with partners and sons or daughters. In a recent population study carried out in two Spanish regions, ICs were also mainly female (56.56%), caring for their mother or father (40.16%) [
15]. An Australian population study reported that most caregivers were also females (64.1%) aged >50 years (43.6%), although care receivers included children with any frailty condition [
14]. A population study of ICs reported that 63.1% were female. However, the mean age was slightly younger (58.01 years), and ICs were caring for parents (26.1%) and 31.5 for their partners [
8]. The results showed how sociodemographic factors reflected the dramatic aging of the population, which embraces both care receivers and ICs. In our study, daughters cared for their mothers; this might be related to cultural roles and the higher life expectancy of women. Gender issues in caring for elderly people have been considered. This is relevant to public health policies intended to improve caregiving considering family circumstances and the demographic transition, and not just disease.
ICs’ high comorbidity, risk factors, and mental conditions may explain why almost half had a predicted survival of <10 years. Worse health status in ICs has been reported [
14] and various studies have examined associated factors and interventions to decrease the caregiver’s burden [
44,
45,
46]. These reports often focus on the diseases and comorbidities of care receivers, but not those of ICs. A survey of ICs not based on care-receiver disease showed that prevalence of cardiovascular diseases and endocrine disorders was not associated with the caregiver’s burden [
16]. Our results suggest that ICs’ health determines the quality of life and the burden more than patient characteristics [
47], except when care receivers require intense care due to total or severe dependency. Given the poor health status, clinicians, nurses, and PHC electronic medical records might include the caregivers’ health to assess whether they can carry out their tasks due to their physical status.
The results were in line with previous reports: female ICs, social support, and depression were factors conditioning their wellbeing [
8,
14,
48]. However, a closer inspection of explanatory the models showed that sex was not a factor in the caregiver burden and the physical summary of quality-of-life models. However, the number of household residents and chronic conditions were associated conditions. Elderly caregivers still cared for even older care receivers, who were not necessarily affected by a specific disease (e.g., Alzheimer’s or other dementias). The age of ICs may be a protective factor against the burden [
16,
49]; however, the explanatory models showed chronic respiratory diseases and other chronic illnesses may play an essential role in ICs wellbeing. Comorbidities and the aging of ICs are not included in ICs instruction courses; therefore, the physical conditions of ICs have been left out of caregiver educational plans and research but determines their wellbeing as ICs.
Caregiver research has concentrated on care-receivers diseases [
11,
12,
13]. A recent meta-analysis suggested that the burden of ICs based on specific care-receiver diseases made sense in two groups: mental illness and physical impairment [
49]. Furthermore, the conceptual model of the caregiver burden emerged from the case of dementia, and thereafter has not been adapted (e.g., by adding more general items) to ICs’ general conditions [
50]. Generalizing ICs issues from studies based on care-receivers diseases is a methodological and ethical concern. If the primary aim is to study ICs status, research might base sample calculations on IC population figures, and not generalize to all ICs. Ethically, it drives a reduction in the ICs’ circumstances to the care receiver, which produces unwished-for effects when planning studies of ICs (e.g., avoid examining the clinical status of ICs). PHC, and more specifically the PHC home-care program, allowed the study of all kinds of caregivers without depending on any disease model. Therefore, the PHC setting is probably where research on caregivers should be carried out when addressing the general status of ICs that is not disease mediated. Other settings, such as outpatient clinics and hospitals, where research on caregivers is widely carried out, are often organized by disease, resulting in their findings being biased towards the disease. In contrast, PHC nurses’ and family physicians’ consultations are patient centered (not focused on disease) and they can easily access all kinds of ICs.
The relatively limited use of social and healthcare services (i.e., respite program and financial benefits) reiterates previous evidence: public resources, including direct financial benefits, are not used by ICs [
8,
15,
51]. Caregivers of patients included in the PHC home program might be reluctant to ask for this aid for various reasons. Older age, retirement status, and the health of caregivers might inhibit the planning of break periods. The social class of our sample might be associated with retirement pensions outside the qualification for public financial aid. Since 2006, Spain’s law has declared the universal nature of social services to help dependent citizens receive benefits [
52]. However, the economic benefits for caring are below the Spanish minimum salary and most retirement pensions. Additionally, budget reductions during the last decade have taken money from most citizens’ programs; now, only the severely dependent patient can access financial aid, and in most cases, care receivers die before attaining access [
53,
54]. Therefore, the structural situation of caregiver programs has driven patients and caregivers to perceive exercising their legal rights as an obstacle course [
5]. To sum up, PHC professionals report that poor availability, caregivers’ reluctance and refusal, mixed with guilt and refusal to acknowledge a need for a break, inhibits them even asking for help [
55]. In our opinion, this issue requires a full analysis. First, caregivers’ needs must be considered, incorporating them into the decision-making process [
56], which might contribute to fewer but more effective actions (programs). Second, programs designed to relieve caregivers require an evaluation system [
57], specifically respite programs, which have been proven to have no effect in the short-, medium-, and long-term [
58], and third, PHC professionals could set new indicators to assess the burden of caregivers effectively, mapping all resources they can easily access and working hand-in-hand with social and community stakeholders, and not be centered on the healthcare system.
This study has some limitations. The survey method may have resulted in a bias of the health status, but all participants completed all questionnaires with assistance. Diseases and diagnoses were taken from the medical record; therefore, the credibility is higher than other studies that used self-reports. As a cross-sectional study, causal links cannot be drawn. However, we did not intend this, and the models were constructed with explanatory but not predictive purposes. While the sample size ICs may seem small, the minimum sample size was achieved. Most studies with ICs include smaller sample sizes without using probabilistic methods and sample size calculations. Therefore, in our study, selection methods and sample size granted external validity to generalize results to ICs of care receivers in home-care specifically in urban areas. In our opinion, ICs from rural, suburban, and other areas might require further study. Finally, the possibility of an ICs’ decline, if selected, might pose a certain degree of bias to achieve a representative sample. However, this kind of bias also happens in all studies because participants use their autonomy rights. In our study, declining affected 19.33% of the potential participants listed. The main reason was lack of time; therefore, in our opinion, this bias does not alter the study’s internal and external validity.
